# Dealing with Alzheimer's in the Family



## applegirl (May 19, 2010)

It is very sad to see a member of our family deteriorate from this cruel disease.  Soon we are likely faced with putting my grandmother in an Alzheimer's care facility.  Her care will soon outpace what my parents and aunt can handle and it will be a sad day if it comes to that.

I was really hoping someone might know how I can find *reviews* or *ratings* of Alzheimer's facilities, so we can decide which place gives the best care, should the family have to place her somewhere.

I have googled a few ideas but found nothing so far.   I don't even know if reviews exist yet for these facilities, but they exist for everything else, so I was hoping.  I already tried Yelp for my area and no reviews.

Thanks for your ideas!
Janna


----------



## pcgirl54 (May 19, 2010)

I cannot lead you to a place but my mother had it for 12 long years and my Dad now 92 took care of her. We brought Hospice in the last 4 months.

This is a terrible disease. I am so sorry for your family and the decisions they need to make.


----------



## DeniseM (May 19, 2010)

Tugger camachinist has an Alzheimer's/Dementia Discussion Forum that you may find helpful.  camachinist is a wealth of info., too.


----------



## applegirl (May 19, 2010)

Thanks Denise, I will check out that forum!

Janna


----------



## suesam (May 19, 2010)

I do not know of any review process but you can check with your state to see how their survey process goes and what kinds of infractions they have had in the past several years. In Iowa we could find out this kind of information from the state. 
I am a resident specialist for a group of assisted livings with memory care units and what I would want to know is things like...what is their philosophy? It should be all about person centered care and they should want to know all about your loved one BEFORE they move in. I would want to know about their staffing and their training. How many staff per resident? The staff should be able to go to trainings outside the facility put on by experts in dementia. I would want to see a daily schedule. What do the residents do all day? Do the residents look clean and well groomed? Busy and happy?  Is it a family like environment or institutional? I would want family like. Visit when they do not know you are coming. I would want to know what level of dementia they specialize in. In our assisted living we specialize in about a 3,4 and 5 on the global deterioration scale. If my loved one was a 4 on the GDS and they had people who were mostly 5 and 6's I would not be real comfortable with that. 

Hopefully this will give you a start. Good luck with this painful process.Alzheimer's disease is very devastating but a good facility should be able to provide a good quality of life with many moments of joy for your grandmother. 

Sue


----------



## falmouth3 (May 19, 2010)

We moved my mother into assisted living in December.  She was quite confused and forgetful.  She hadn't been eating well and seemed depressed as well.  We chose a _Sunrise_ facility because they have varying levels of care.  We were glad that they had an Alzheimer's unit where she is.  Although she had made wonderful progress there, with regular meals, meds and mental stimulation, we know that the day will come when she will need to move into the Alzheimer's unit.  The staff there is incredibly sweet and caring.  My mother has truly bloomed there.


----------



## Passepartout (May 19, 2010)

Janna, you may just want to drop in unannounced to several care facilities within whatever driving distance you are comfortable going. You and family members will be making the trip a lot. As sad as it is to say, as long as the place is clean, care is good and staff respectful and loving, in the end, the facility will mean a lot more to you and the family than to the afflicted. A nearby facility= more visits.

Please accept my heartfelt sympathy for your situation and support for your decision. 

Jim Ricks


----------



## applegirl (May 19, 2010)

Thank you all for your thoughtful posts.  A special thanks to Suesam for some very specific points to think about as we go forward.  I am going to write down all the points you mention and ask many questions as we choose a facility.  I will try to find state records of their reviews. My grandmother has done soooooooooo much for all of us in the family, we want to take care of her as long as possible and then choose the very best she can afford for the rest of her time.  I agree with Rick, closer will mean more visits.  Many, many things to think about.

Thanks guys.  YOu are the best.

Janna


----------



## Beaglemom3 (May 19, 2010)

Janna,
  Our rating system in Massachusetts is similar to other states. You might have this already, but here are some links to California ratings. 

http://www.assistedseniorliving.net/services/california/

http://www.medicare.gov/NHCompare/Include/DataSection/Questions/ProximitySearch.asp?bhcp=1


I've been dealing with my Mum's slow decline into this for ten years. We're at the end-stage now at 91 and a half.

Hang in there and feel free to PM me if you'd like to chat.

B.


----------



## isisdave (May 19, 2010)

Janna,

Been there, done that. My best wishes.

Is she near you, or at least in California? All California counties have an Office of Aging (the name varies), and yours is here ...

Also, there is a small magazine that lists various senior living options. I can't remember its name, but your local senior center (another good resource) will probably have it. There are various editions by region.

And you can contact a discharge planner at your local hospital.  They'll know the local options.

Here's something most people never heard of: if she's a veteran or the widow of a veteran,  there may be financial help for assisted living if her income is low enough ... and the qualifying amount wasn't TOO low, as I recall. And if she is fortunate enough NOT to be low-income, a large part of assisted living fees are deductible as medical expenses.

Regards
Dave


----------



## johnsontrio (May 20, 2010)

You might take a look at a website called *A Place for Mom*.  They are a no-fee organization that will call you, discuss with you the history of the client, and give you information about and referrals to all the care facilities in your area.  We found them particularly helpful in finding the small group homes in our area that specialize in memory impaired care.  Once you register your information on the website, a representative from A Place for Mom will contact you through the preferred method you have provided.  That person becomes your "case worker" so to speak and is the same person that contacts you or is available to you.  They will forward your information to the caregivers in your area for them to contact you if you wish.


----------



## suesam (May 20, 2010)

Keep in mind that A Place for Mom is a great resource but it just really helps you locate the different levels of care.They do not know about the kind of care a facility provides.  They more than likely have not been in the buildings that you are looking at. I have worked with them and they are a locator but I have never seen them, or heard of them actually visiting any of our buildings. Also... they do not charge the prospect but they charge the facility a pretty hefty fee if you actually move in. 

Sue


----------



## falmouth3 (May 20, 2010)

I worked with A Place for Mom and the woman I dealt with was quite knowledgeable about the resources that she was providing to me.  I told her what I liked and didn't like about some of the places I'd visited and with more information, she was better able to guide me. They also have some very good articles to read.  After making good use of their help, my mother decided that she didn't want to stay on Long Island, and my sister did the footwork to move Mom to Delaware, which is where my sister lives.


----------



## johnsontrio (May 20, 2010)

suesam said:


> Keep in mind that A Place for Mom is a great resource but it just really helps you locate the different levels of care.They do not know about the kind of care a facility provides.  They more than likely have not been in the buildings that you are looking at. I have worked with them and they are a locator but I have never seen them, or heard of them actually visiting any of our buildings. Also... they do not charge the prospect but they charge the facility a pretty hefty fee if you actually move in.
> 
> Sue



In our area the group homes do not advertise so I don't know how you would go about finding them if not for a service like this.  I would think personal research and visits would be a must before choosing any facility.  I know in our situation, DMIL was diagnosed with early to moderate stages of Alzheimer's by the geriatrician at a major medical center.  We were never given any assistance by them for finding an alternative to her living home alone and driving around town aimlessly for many hours per day.  We explored all the major providers of care and made the only choice the family (she has 7 children) could agree on at that time.

The woman I am working with at  A Place for Mom seems quite knowledgeable about the small group homes in our area and is personally acquainted with the owners.  She also has some "inside" information on the larger corporate type facilities in our area.  I'm not sure what organization would rate these facilities as the OP is inquiring about, nor do I know if that would even be helpful in the ultimate decision.  As I progress through this, it becomes apparent to me that you have to find the right fit between the client and the facility.  DMIL has not done near as well as the family had predicted or hoped for and is not at this point in an facility that is maximizing her quality of life.  We are waiting for another complete evaluation (last one done 2 years ago) to reassess what her needs are.

OP, good luck with the decisions you face.  I think Alzheimer's can be as difficult on the family members as it is on the patient.  Differing levels of acceptance of the fact that DMIL even has a disease is dividing our family and straining all communication.  It sucks.


----------



## Hawaiibarb (May 20, 2010)

*More advice*

Suesam really made some good points. When you visit a facility, try to get the "feel" of the place.  Is the staff friendly, do they stop to speak with the residents, or are people just lined up in their wheelchairs.  A social worker or case manager at your local hospital is often a good resource.

As everyone agrees, Alzheimer's disease is nasty.  

My heart goes out to you!

Barb


----------



## Liz Wolf-Spada (May 20, 2010)

Janna, I am sorry to hear about this. My mom had Alzheimer's before she passed on and it was very hard. She and my dad (who had Parkinson's) had long term care policies which paid for more than half a year of 24 hour a day live in care, and they had enough money to pay for the rest. My DH's mom does not have Alzheimer's, but has some milder form of dementia and other problems from a stroke. She is now living in a rented room with someone who had been a part-time caregiver. The caregiver is willing to take just her social security in exchange for care and the room and his mom is doing very well.
Liz


----------



## applegirl (May 22, 2010)

Thank you all for your good suggestions and wishes as we begin to explore our options for the inevitable.  I need to especially look into one posters recommendation to see if my grandmother would qualify for any additional assistance with payment because she is the widow of a WW II veteran, my grandfather.  I need a good chunk of time to compile the great ideas on this thread and look into them with due diligence.  I am completely starting from scratch on this matter and with two young kids under foot, it will be a challenge but it's important.  I am quite sure that the posts of TUGgers here have saved me countless hours by giving me places to look at that I might not have found.

I may contact a few of you for specific questions and I really appreciate your support!   TUGgers are the best.  I think this has to be one of the best online communities out there. 

Regards,
Janna


----------



## Cathyb (May 22, 2010)

*Sorry to hear*



applegirl said:


> It is very sad to see a member of our family deteriorate from this cruel disease.  Soon we are likely faced with putting my grandmother in an Alzheimer's care facility.  Her care will soon outpace what my parents and aunt can handle and it will be a sad day if it comes to that.
> 
> I was really hoping someone might know how I can find *reviews* or *ratings* of Alzheimer's facilities, so we can decide which place gives the best care, should the family have to place her somewhere.
> 
> ...



Applegirl:  Good luck in your pursuit.  I may be in the same boat as you in a few years as my DH is in early dementia stages now and was wondering if you find some good California websites, if you could share here with them?  In fact it is 4:30AM right now and I couldn't sleep worrying about where we go from here financially if we need to use an Alzheimer facility. Thank you.


----------



## Beaglemom3 (May 22, 2010)

applegirl said:


> Thank you all for your good suggestions and wishes as we begin to explore our options for the inevitable.  I need to especially look into one posters recommendation to see if my grandmother would qualify for any additional assistance with payment because she is the widow of a WW II veteran, my grandfather.  I need a good chunk of time to compile the great ideas on this thread and look into them with due diligence.  I am completely starting from scratch on this matter and with two young kids under foot, it will be a challenge but it's important.  I am quite sure that the posts of TUGgers here have saved me countless hours by giving me places to look at that I might not have found.
> 
> I may contact a few of you for specific questions and I really appreciate your support!   TUGgers are the best.  I think this has to be one of the best online communities out there.
> 
> ...



Janna,
  I hope you find something, but my Mum, a widow of a career officer Air Force man (WWII & Korea) only qualified for a very, very small benefit of $60 that was offset by the SBP that she gets every month. Sorry to be the bearer of bad news. Maybe the state that you live in has something that we do not have here. I hope so.

  This may sound odd, but while visiting a facility, look, listen, feel and_ "sniff"._
As a 30+ year nurse (RN/NP), I know that this is a tell-tale sign of good or potentially bad care. Do it on return trips to make sure that they weren't having a rare, bad day, understaffed day as it does happen in even the best of places. If the staff is hanging around chatting whilst the residents are leaning over in wheelchairs, ask why. If the smell of urine persists, ask why. 

  I shopped around for a good place for my Mum, unfortunately, I was taken in by the first one that had oriental rugs, nice chandeliers, floral arrangements in the foyer. They gave a great first impression, but neglectful care despite a high state rating. I took her out of there and brought her home until I could no longer transfer in/out of bed safely. I found a great place and she has been there for 3 years now and is well taken care of.

Best to you during these difficult days.


----------



## Liz Wolf-Spada (May 22, 2010)

There is a place in Wrightwood, I think it is called St. Francis and they do assisted living. I have a friend who has been working part time as the manager there and I believe her mother stays there, when not with my friend. It seems a little far for you, but it is small and everyone has a private room.
Liz


----------



## AwayWeGo (May 27, 2010)

*Fairfax Band Benefit Fund Raiser For Alzheimer's Association.*

Virginia's City Of Fairfax Band, in cooperation with the Alzheimer's Association, is putting on a benefit concert June 5, 2010, at George Mason University's Center For The Arts, Fairfax VA.  The show starts at 8PM. 

The special event -- _Bravo Broadway !_ -- features Debbie Gravitte &  Michael Maguire & Christiane Noll in a spectacular production blending past & present Broadway numbers from _Mamma Mia_, _Chicago_, _Cats_, _Funny Girl_, _Phantom Of The Opera_, & more. 

Included is Mark Camphouse's powerful composition titled _The Shining City_, a narrated musical work based on writings by President Ronald Reagan, presented on the 6th anniversary of President Reagan's death as a tribute to all those struggling with the debilitating effects of Alzheimer's disease. 

The occasion also marks the 40th anniversary of Virginia's City Of Fairfax Band, as well as the 30th anniversary of the Alzheimer's Association. 

Click here for the Joint Resolution of the Virginia General Assembly commemorating the City Of Fairfax Band's 40th anniversary. 

Click here for a TUG-BBS entry containing a descriptive program note about _The Shining City_. 

-- Alan Cole, McLean (Fairfax County), Virginia, USA.​


----------



## johnsontrio (May 27, 2010)

I want to address the aforementioned monies available for WWII vets and their surviving spouses.  Some have mentioned this benefit possibly being different on a state to state basis.  Since it is a VA benefit, I'm not sure how that could possible be.  Perhaps some states offer additional benefits.

My DH was made aware of these benefits by one of the social workers at one of the facilities that we visited.  He spent much time researching it.  First and foremost, you need a copy of the discharge papers for the eligible service member to prove eligibility.  If you don't have these, as we did not, you will need to obtain a copy of these.  Unfortunately, one of the main storage facilities (possibly St. Louis?) of these records had a severe fire and many of these records were lost.  We were finally able to get the records we needed.

Our understanding of this benefit is that a service member is eligible for about $1300/month of money to be used towards assisted living needs.  The spouse is eligible for about $900/month.  You must show these funds being actively spent on assisted living when you apply.  The application can take up to 9 months to process but they do pay retroactively to the file date once you are approved.  I have heard of instances where intervention by a legislator has sped up the process of approval.

The beneficiary of these benefits must show financial need.  They can have no assets in excess of $80,000 except their home.  Since we had sold DMIL home in order to have assets with which to provide for her care, we are not eligible for this yet.  As we, out of necessity, spend down her assets we will be eligible to apply on her behalf for these benefits.

Hope that basic information is of help to someone.  I know the application for these benefits are available on the web, but am not certain of the website.  Any long term care facility should be familiar with this and be able to help steer you in the right direction.


----------



## Lee B (May 27, 2010)

Here are a few points that I have picked up very recently.

Point A:  There are three or so prescription drugs to improve memory.  Your AD person probably should be taking one.

Point B:  An herbal supplement is called Huperzine-A.  I saw two products that contain 50mcg of Hup-A and something else (one of them had gingko biloba).  I started taking one then the other.  Now, though, I found a product that didn't have Hup-A in the name, but has 100mcg of it.  That product is called Focus Formula (not the more-advertised Focus Factor).

Point C:  Those prescription drugs _and_ the Hup-A are supposed to increase Acetyl Choline, a so-called autonomic neural transmitter.

Point D:  Many prescription drugs have a side effect called "dry mouth."  Not only will it dry your mouth, but also your digestive system so your doctor may recommend a stool softener.  I took such a drug for awhile and, as the doctor said, it made me dry.  So dry that I stopped taking it.

I happened to remember reading the fine-print scientific enclosure that said that the drug was _anti-cholinergic_, and that's why it dries you.  Hmmm, after I read that Hup-A and the prescription memory drugs are _cholinergic_, I decided to bring it up with my doctor who said yes, sometimes that drug I took affects memory and would I like him to prescribe a memory drug?  I told him I was taking Huperzine-A for now, but maybe later.

Point E:  If you are taking a drug that dries you, find out whether it decreases your acetyl choline and if so, ask yourself whether your memory is any weaker than before.

I think that every physician should be alerted to the memory side effect of anti-cholinergic drugs and inform their patients.  Maybe a maintenance drug or two that a person is taking is robbing their memory.  That's scary.


----------



## StillTrying (Aug 16, 2010)

*A Resource*

There are lots of good resources to help find local assisted living. For instance, here's a site with detailed info on assisted living in houston, where you can see costs and such, but no reviews. All the sites with ratings that I've seen only have awful, sad stories. I guess it's just not a happy situation.


----------



## dgdbloe (Aug 16, 2010)

I agree with DenisM.  Go to Alzheimer's/Dementia Discussion Forum.

I took care of my mom for 3yrs with AD and found a wealth of info and support there.
Good luck to you and your family. This will not be easy.


----------



## Cathyb (Aug 17, 2010)

*Update on DH*



Cathyb said:


> Applegirl:  Good luck in your pursuit.  I may be in the same boat as you in a few years as my DH is in early dementia stages now and was wondering if you find some good California websites, if you could share here with them?  In fact it is 4:30AM right now and I couldn't sleep worrying about where we go from here financially if we need to use an Alzheimer facility. Thank you.



Thumbs up for us :whoopie: .  DH is on two meds:  Exelon and one other and he is doing so much better!  Yes, he forgets things but nothing like 7-8 months ago.  Applegirl, hope things have leveled for your family.


----------



## Liz Wolf-Spada (Aug 17, 2010)

That's good news, Cathy. Is he also taking Namenda? We found that for my mom when it was still being imported from Germany as Memantine and it made a big difference for her (at least that I could observe).
Liz


----------



## Cathyb (Aug 17, 2010)

*Liz*



Liz Wolf-Spada said:


> That's good news, Cathy. Is he also taking Namenda? We found that for my mom when it was still being imported from Germany as Memantine and it made a big difference for her (at least that I could observe).
> Liz



Namenda - yes that is the other medicine.  Hey Liz, how is your hubby doing?  I have checked TUG from time to time and haven't seen an update since he was first in the hospital.


----------



## bobby (Aug 17, 2010)

My mom had Alzheimers for 20 years and just died at almost 99 years. We went through the assisted living level and then to a nursing home when she couldn't reliably walk without fall possibilities. She got good care at Renaissance Gardens, a national chain. One thing is to actually ask the staff you see how long they have been working there. My mom had consistent caretakers for multiple years and that is important as they decline. Staff changing would have meant that they did not know my mom's needs.

The one thing I didn't like about going to a nursing home is they put everyone in wheelchairs. While you have to so they don't fall walking around, their medical insurance should cover PT sessions to keep them able to walk and staff should take some time daily to keep those able on their feet. My mom was walking all over with her walker when she moved and within a week or two had lost the ability from sitting in the wheelchair.


----------



## pianodinosaur (Aug 18, 2010)

I have learned two great lessons about Alzheimer's disease after graduating medical school in 1977.  This comes after practicing medicine in one town for almost 25 years and seeing many people go from a normal, healthy individuals to bedridden vegetables.
1. Alzheimer's disease is a disease that kills the family.
2. A mind is a terrible thing to lose.

I realize that this is not very comforting. I hope that we someday find a cure.


----------



## Liz Wolf-Spada (Aug 18, 2010)

Cathy, my husband is doing really, really well. He is much, much better than he was 6 months before being hospitalized. We still have a PET scan to go through to make sure the cancer did not spread, but so far, so good.
Liz


----------



## Zac495 (Aug 19, 2010)

So sorry - what a difficult time. I see it coming for us with my father, too. He has lost short term memory and the ability to learn new things. He still has long term memory, and he's still able to live in the house, but it's so sad to see such a brilliant man (college prof at U of P) end up the way he FEARED. He used to tell us all the time (as kids) - If he starts going like his mom did, shoot him. He would beg us and of course it irritated us as kids.

I can tell he knows it's happening, but he's still so there at times - and other times my mom and i look at each other with worry.

Keep us updated. Love.


----------



## Liz Wolf-Spada (Aug 19, 2010)

Ellen, is your dad getting treatment? If he isn't he should see a doctor and get started on the Alzheimer's medications. They can't cure it, but they can help it be more manageable and less symptomatic. I saw a lot of improvement with my mom with the Nameda, although the doctor did tell us we would need to  observe and note all the changes, because it is by observation of caregivers that he would find the right dose.
Liz


----------



## Rose Pink (Aug 19, 2010)

Yesterday, DH and I took his father to lunch at a nursing home that specializes in dementia.  I was hoping to be able to take him there two or three times a week for lunch and some socialization.  He gets so bored at home.  Then, as he got used to the place and the people, I hoped I could have him stay for a few days to a week at a time while I go out of state to visit my children and grandchildren.  I wanted one place, one environment that I could use as respite care.

Well, today Dad fell and now he says he can't stand up at all.  He is not in pain so I feel confident he didn't break anything.  Parkinson's has stolen his balance and his strength.  I am waiting for the home health agency to come evaluate him, etc.

As a back up, I called the nursing home we visited yesterday to inquire about their rates.  About 6 grand a month.  Ouch.  In less than two years he'd be out of money and on medicaid--at which point he'd get transferred to another facility that functions on less money.  

I really think he'd be better off in a place that can meet all of his needs.  He does get bored here but I know he'd freak out at the expense.  

Also, I am feeling inadequate and heartbroken that I cannot meet everyone's needs and my own, too.


----------



## Passepartout (Aug 19, 2010)

Rose Pink said:


> As a back up, I called the nursing home we visited yesterday to inquire about their rates.  About 6 grand a month.  Ouch.  In less than two years he'd be out of money and on medicaid--at which point he'd get transferred to another facility that functions on less money.
> 
> I really think he'd be better off in a place that can meet all of his needs.  He does get bored here but I know he'd freak out at the expense.
> 
> Also, I am feeling inadequate and heartbroken that I cannot meet everyone's needs and my own, too.



My heart goes out to you for all that you are doing for your FIL. You are a good person.

I really have no intention to be cold and analytical, but assuming Dad has resources to last him in relative comfort for two years, that may be enough. If you look back to his condition 2 years ago, and mentally draw a line to where he is today, do you think his condition will improve? I suppose it could happen, but I'd guess it's unlikely. 

You will be able to make a much better assessment of what to do after the home health agency evaluates him. They know the timeline of the progression of Parkinson's and Alzheimer's. They will be able to help you (and him) conserve his assets so that he can have the care he deserves and you want him to have.

Take good care of yourself. I was glad to see you went to a movie the other night. You need the diversion.

Jim


----------



## MelBay (Aug 19, 2010)

*Been there, done that...*

My mom was diagnosed with AZ at age 89.  My dad had a comfortable savings, and when we finally had no choice but to move her to a home, the thought of sending them $6000 a month literally killed him within a year.  As an only child, I was left with caring for her.  Alzheimer's is truly cruel - it is far more devastating on the family than it is the patient.  I pray I never put my children through that hell.

Back to the practicalities:  I used both of these links to help locate facilities:

http://www.medicare.gov/nhcompare/

and

http://www.aplaceformom.com/

I was also lucky enough to have an Employee Assistance Plan through my work and they paid for an in home evaluation and helped convince my dad he was flirting with disaster by keeping her at home.  I'd been telling him that for months but hearing it from an impartial third party really sealed the deal. In spite of her congestive heart failure and paralysis from a stroke, she managed to hang on for two years.  

Good luck to anyone going through this with a loved one.  Each night when my head hits the pillow I pray for a cure.  No one ever recovers from Alzheimer's.


----------



## Rose Pink (Aug 19, 2010)

*Degrees of Decrepitude*

I forgot to factor in Dad's income of just under $2000 a month.  I think we could stretch that and his savings and the income from his house (if we can ever get it ready for market) to last for about 4.5 years.  I don't think he'll live longer than that but three years ago I didn't think he'd live this long.  Just when I think he can't get any worse, he gets worse.  

He wet the bed this afternoon, and that is one of his biggest fears.  He did manage to walk to the tub and get in.  I couldn't reach his shower aide so I showered him myself.  Talk about losing your dignity.  Poor man.  I put him in Depends for the night.  He is humiliated that he is in what he calls "diapers."  We've had the discussion many, many times.  I told him most men his age wear them but he has some ingrained emotional idea that urinary incontinence is somehow a moral weakness.

I told him he is not to try to get out of bed during the night without help.  I hope he remembers.  I bought a baby monitor today so we could hear him but I'm afraid I'll sleep through it.

I will be talking to  home health tomorrow about a catheter--Dad finds that less humiliating than Depends.  I also need to find out about wheelchair ramps.  I was told he doesn't qualify for home health if he can't get out of the house in an emergency.  Good point.

Anyway, my point in sharing this is that we do get old.  We do get decrepit, we will most likely need help and that help is very, very expensive.  

If you love your children, take care of your health* now*.  What you eat _now_, how active you are _now_, whether you smoke, etc will all determine how well you age.

And, make peace with your children and their spouses.  You never know who is going to be making decisions for you.  I doubt it ever crossed my FIL's mind that his daughter-in-law would be washing his naked body and putting him in Depends.

Now, I need to look at my finances and figure out how to build up a bigger nest egg for my nursing home.  I want a nice one.


----------



## Passepartout (Aug 20, 2010)

Rose Pink said:


> ..... make peace with your children and their spouses.  You never know who is going to be making decisions for you.  I doubt it ever crossed my FIL's mind that his daughter-in-law would be washing his naked body and putting him in Depends.
> 
> Now, I need to look at my finances and figure out how to build up a bigger nest egg for my nursing home.  I want a nice one.



It has been said many times, "Treat your kids well, they'll choose your nursing home."

I was my Mom's caregiver for a time post stroke. After a UTI, we found she was wiping forward so we had to take the T.P. away from her and it came down to her caregivers, including me, to do the post toileting cleanup. I know of what you speak. In the end, it's more embarrassing to  the aged parent than to the adult caregiver.

It's enough to ease the pain of writing the check for LTC insurance.

A long life is good, but not when you outlive your money....No one plans to be a dependent... Jim


----------



## camachinist (Aug 20, 2010)

Having been through most of the process for the last eight years, including the financial and legal parts (which can be very tricky), I can say that finding a place with a good staff, more than anything, determines both patient QOL and caregiver/caremanger sanity. The building/facility itself is largely irrelevant. Wonderful staff can exist in modest accomodations.

I'm doing end of life care now (just met with staff today to work out the details and get the morphine ordered) and can say it's been an educating experience I wouldn't wish on anyone. 

Best wishes to the caregivers, family members and patients. Also, for those so inclined, seek out and make use of research facilities like UCSF which offer comprehensive diagnosis, support, tracking, and, in my mom's case, brain autopsy to share data with other research and academic organizations around the world. Everything we can find out about this debillitating and terminal disease will someday lead to better quality of life for everyone. 

Lastly, unless someone is wealthy, plan on MediCaid being a part of one's life during this disease because, at some point, full-time skilled nursing care will be required. Currently, MediCaid is working to expand coverages to less specific facilities like dementia ALF's, so many in the future may not have the burdens which I did. Depending upon the type of dementia, care can go on for a very long time. My mom's was relatively short, at eight years, three in a SNF. The woman in the bed next to her had been admitted to the facility with schizophrenia and ultimately died of AD and had lived there 30 years.

I'm an only child so there are no siblings to fight with, but I also have faced care decisions and crises alone. The process cost me my marriage and a large chunk of my business, but life goes on. I just hope AD isn't genetic or, if it is, I get passed up. Helluva way to go...

Take care 

Pat


----------



## Rose Pink (Aug 21, 2010)

I am taking Dad to a nursing home tomorrow.  I feel as though I am betraying his trust but I cannot keep him safe here at  home.  My plan to transition him gradually into a week of respite now and then just didn't work out.

I haven't told him.  He would just worry and stew all night long.  I am approaching this as a trial period to see if he can adjust.  At this point, I am just winging it.  If it doesn't work out, I will bring him home and hire help.  At home care with hired help is even more expensive and provides less services such as entertainment and socialization so I hope he can adjust and learn to like the new environment.  

He worked hard all of his life and denied himself the niceties so that he could retire with his wife.  She died 11 years ago.  He lost his driver's license (and therefore much of his freedom).  We yanked him out of his house two months ago and now I am placing him in a nursing home.  He realized a few months ago that he couldn't do figures anymore and handed the finances over to me.  Parkinson's is stealing his mind and his mobility.  

Life sucks for him.


----------



## MULTIZ321 (Aug 21, 2010)

johnsontrio said:


> I want to address the aforementioned monies available for WWII vets and their surviving spouses.  Some have mentioned this benefit possibly being different on a state to state basis.  Since it is a VA benefit, I'm not sure how that could possible be.  Perhaps some states offer additional benefits.
> 
> My DH was made aware of these benefits by one of the social workers at one of the facilities that we visited.  He spent much time researching it.  First and foremost, you need a copy of the discharge papers for the eligible service member to prove eligibility.  If you don't have these, as we did not, you will need to obtain a copy of these.  Unfortunately, one of the main storage facilities (possibly St. Louis?) of these records had a severe fire and many of these records were lost.  We were finally able to get the records we needed.
> 
> ...



See this link for information on DD Form 214, Discharge Papers and Separation Documents 

And see eVetRecs: Request Copies of Military Personnel Records

and Military  Record Requests: Standard Form SF-180

Re Assisted Living Help from the VA -

The Veterans Administration offers Aid and Attendance as part of an "Improved Pension" Benefit that is largely unknown. This Improved Pension allows for Veterans and surviving spouses who require the regular attendance of another person to assist in eating, bathing, dressing, undressing, medication dosing, or taking care of the needs of nature to receive additional monetary benefits. It also includes individuals who are blind or a patient in a nursing home because of mental or physical incapacity. Assisted care in an Assisted Living facility also qualifies.

See this link for an Introduction to the Veterans'  Aid and Attendance Improved Pension

Also Veteran's Aid & Attendance Benefit

Richard


----------



## camachinist (Aug 21, 2010)

I chronicled my process of getting A&A for my mom, a survivor of a WW2 vet, on my forum. It took three years and the threat of a lawsuit to finally get them off their asses. They're idiots. Straight up and individually. I'm saddened that my tax money goes to pay for their existence as human beings.


----------



## vacationhopeful (Aug 21, 2010)

Rose Pink -
My father was very independant, controlling, and private. As my Mom sank into AD, he disguised her failings and spent all his energy and time trying to care for her. 4 of their 5 children lived out of state, had careers and made their Sunday phone calls to the parents who used a speaker phone. She would sometimes wander off and neighbors would call or he would find her banging on their doors, lost and confused. But then she told the water meter reader that some man in the house was trying to kill her. 8 or more local cops appeared, mainly interested in what was in his house and where did I live (not there). And I had to then become very involved in her care.

Eventually, she needed the care you seek for your FIL. I needed to make sure that my father would not bring her back to the house once she was moved to a nursing home. I could not recreate the 24 hour a day care which I had in place for those past 12 months.

IMHO, know in your own heart, that you can not bring him back to your house ever again. Plan on spending 20-30 minutes in the early AM (most alert time for many) and return around lunch for 15-20 minutes. Afternoons are much less productive for visiting. And the staff should have them settled down BEFORE sunset.

As I was the only child around, I realized early on she did not know who I was. She was scared of me and telling her my name did nothing. But my line became, "Hi Mom, it's me, your favorite daughter" immediately made her happy and had her trying to engage me.  Their world becomes very small. Be prepared for monologues on your part and talk about things in the family history (funny stories worked well for my mom). This all mentally tires them out. And conversations requiring a decision - leave the room; choices are impossible and unsettling for them now. Also multiple people talking raises anxiety levels as it is very difficult for them to figure out where all the voices are coming from or what they are saying.

I was the only one who could physical transport my Mom outside of the nursing home. Dental surgeries (extractions needed from falling out of bed) and the hair salon (the nursing home's professional was highway robbery and a cat groomer could have done better). She spent her last 16+ months living there and I took her to the beauty salon just 2 weeks before she passed away. She was 21 when Pearl Harbor occurred and she finally got a job. But due to the war, about the only thing she could spend her money on, was getting her hair done. She still had that love of being fussed over. And most times after that, I would take her inside Friendly's Ice Cream and she would just watch the kids at the surrounding tables, saying "baby; oh, baby" as she ate some ice cream.

*Funny Story*: While Mom was still at home and 21 months before her passing, my RN nurse sister came home for 3 weeks to help my dad. One afternoon, she and the LPN decided to take my Mom to the hair salon and follow it up with the ice cream. 2 of them; 1 95lb 78 yo old lady. Mom screamed and beat on the glass all the way to the salon. Was upset and lashing out in salon. Getting her back into the car, she kept refusing. Sis and LPN decided to forego the pleasures of taking her inside a public dining room for ice cream.
When I showed up at the house, both of them blasted me for subjecting them and Mom to this total insanity of getting her haircut. I am thinking, "Mom likes this trip; what were they doing to upset her?" Replay in my mind what I do. OH! "Did you tell Mom that you had to make sure her seatbelt was tight before you could start the ROLLER COASTER? Did you make roller coaster screams and ah's as you went around cornors and over & down the over pass?" My Mom loved roller coasters in her youth - she still loved them somewheres then, too.


----------



## MelBay (Aug 21, 2010)

Linda, that is a lovely post.  I can SO relate to so much of what you said, particulary about your dad.


----------



## Rose Pink (Aug 21, 2010)

I enjoy reading the heartwarming stories. I am glad I had the past couple of months with Dad in my home. The move to the care center did not happen today due to a glitch in admission papers so we will try again on Monday.  I have reconciled myself that he will not be coming back here to live.  I wish it could be different but it isn't.

I've found that I have to be very careful to modulate my voice. Any sign of worry or distress in my voice or demeanor is interpreted as anger and Dad thinks I am mad at him. Even though I've told him time and time again that I am never angry with him, he will still start to cry and wonder what he's done wrong. At those distressing times he calls me by his daughter's name, not my name. I chalk it up to dementia but I still feel bad that he thinks I could be angry with him and sometimes no amount of reassuring will convince him.

I've been thinking alot about how I will age and what kind of old lady I will be and how my children will treat me. DD said don't worry, she'll make sure I have a computer to play "circle the cat." It's all Karen G's fault!


----------



## Fern Modena (Aug 22, 2010)

Rose Pink,
I wanted to email you, but I don't have your email address.  You can email me if you wish.  I was where you are at one time, with my father.  Hard as it may be, you are doing the right thing.  

Taking care of your FIL at home is a nice idea, but quite often it can't be a reality.  Your FIL wouldn't have the structure and safety at home that he will in a facility.  You will still be able to see him, and will continue to do so, I am sure.  

The "ice cream" thing you mentioned brought out an interesting memory.  I used to go to see my father every day after work (this would be about 2:30 PM, I worked early).  I'd always ask the kitchen to get me some ice cream for him, and they'd give me a cup.  Dad liked ice cream, and he'd eat it while we visited.

People with dementia frequently can remember things from long ago clearly, but may say that they didn't have lunch.  So asking him about when he was a child, or when he met "mom" might be interesting topics (at least the first few times).  

Although it is difficult, try not to ask him questions, or to make decisions, cause he has probably lost the ability to choose between things, even if given choices.  He'll want to please you, and be frustrated from not knowing how.

If he thinks you are someone else, if you can, let it be, and it will make him happier.  If you can't do that (and it isn't easy), be prepared to explain over and over who you are.

Alzheimer's is a terrible disease.  It is a disease which keeps taking and taking...after awhile the patient isn't frustrated any more because they don't realize what they don't know.  But the relatives, they always know, and that's the real tragedy.

If you want to talk, email me.

Fern


----------



## Rose Pink (Aug 22, 2010)

Thanks.  I know I am doing the right thing so why does it feel like a betrayal?  

Dad brought up "nursing home" today.  I think he knows that is where he needs to be.  He doesn't want to cause me any work or inconvenience.  I only get to sleep about two hours at a time--if that--because I get up whenever he gets up to go to the bathroom.  He feels bad about that.  He is terrified of wetting the bed and causing me work so his worry doesn't allow himself to sleep deeply.  He keeps asking how we are going to solve this problem. I reminded him that we are going to the "senior center" tomorrow for lunch and we could ask them what they would recommend.  He liked that idea.  Then I added that maybe they would let him stay over for a few days to work on a solution.  He didn't respond to that.

One day at a time.


----------



## glypnirsgirl (Aug 22, 2010)

Rose Pink said:


> I am taking Dad to a nursing home tomorrow.  I feel as though I am betraying his trust but I cannot keep him safe here at  home.  My plan to transition him gradually into a week of respite now and then just didn't work out.
> 
> I haven't told him.  He would just worry and stew all night long.  I am approaching this as a trial period to see if he can adjust.  At this point, I am just winging it.  If it doesn't work out, I will bring him home and hire help.  At home care with hired help is even more expensive and provides less services such as entertainment and socialization so I hope he can adjust and learn to like the new environment.
> 
> ...



My father in law was a chemist for Westinghouse. He had a PhD. And Parkinson's stole his mind as well. He lost his wife, then the assisted care facility that they were living in lost their licensing (I think because they had residents who they continued to care for when they really needed nursing home care - and they were doing a great job). My sister in law handled her mother's demise and was worn out from that when the assisted living center closed.

Ian's parents had me do an analysis of their finances before they moved to the assisted living center. So we knew that they were okay for 5 years financially. 

We moved George down here to be in an assisted living facility. He developed pneumonia and a urinary tract infection and had to be hospitalized. In the hospital he became combative and would not stay in bed and they used restraints. When I came to check on him, he thought that I was responsible for putting him in prison. I had to call my sister-in-law, his only daughter and favorite child, for her to talk to him. He would listen to her when he would not listen to anyone else.

He was released from the hospital to a rehabilitation center. And the rehabilitation center determined that they could not care for him because he was trying to get out of the facility. And they moved him to the Alzheimer's unit because it was a lock-down facility. 

The unit was very close to our home, we could even walk there if necessary. Between Ian and I, we visited him once a day and took him on outings every weekend until he did not want to go. 

One of the things that most commonly kills Parkinson's patients is a loss of swallowing ability. It is important to discuss with your father in law if this starts to happen whether or not he wants to have a feeding tube inserted. That is one of the hardest conversations that I ever had with anyone (and I have hard conversations all of the time). He decided he did not want a feeding tube. We got him speech therapy and physical therapy so that he would have some continued agility and continued swallowing ability as long as possible. 

We signed a waiver so that he could continue to eat even though there was a choking risk (and I understand that some states do not allow this). The food was ground and his drinks were thickened. We even had to thicken his milkshakes - when he would no longer go out, we continued to bring him chocolate milkshakes. 

He died about 9 months after his wife, about 8 months after moving here. 

It is a sad process. We know that we did the best that we could to make his last days as pleasant as possible.

I wish all of you going through this all of the best. It is a hard journey.

elaine


----------



## Rose Pink (Aug 22, 2010)

We do have Dad's advanced directives in place.  No heroics, DNR.  I am not sure what the nursing facility has in place for dietary orders but I worked with their doctor at a different facility where we called it "recreational dining."  That is what I will specify when I admit Dad tomorrow.  He has diabetes and a host of other ailments but as far as I am concerned, he can have whatever he wants.  I am not going to worry about aspiration.  Eating is one of the few pleasures he has and I am not going to take that away from  him.

It's clear his mind is going.  Although he is still alert and oriented, he cannot seem to learn even the simplest of tasks.

He mentioned "nursing home" to me today and again to DD at suppertime.  He knows that is where he is headed, just not how soon.  Once he gets over the shock of the move, I think he will enjoy the attention and activities--IF he can stop worrying about the money.  He told DD tonight that he couldn't get a job any longer to earn money to pay for it.  When she told him he already had plenty of money, he said he'd already promised it to his children.  And round in circles we go--again.


----------



## MelBay (Aug 23, 2010)

> We do have Dad's advanced directives in place. No heroics, DNR.



We had the same thing for both my parents, and my assumption that "all this" would be taken care of by those papers was sadly incorrect.  I could (and should) write a book about it, but my mother was private pay, so keeping her alive was in their best interest.  I had a Dr. friend talk to the medical director at the nursing home, and he finally relented to put her in hospice.  She was 92, was in the late stages of congestive heart failure, had a stroke when she was 90, was paralyzed and had Alzheimer's, yet everytime she sneezed they rushed her to the ER.  Not until we got her on hospice did all the heroics stop.  Even then I had to reign them in sometimes.  At a care planning meeting I asked the 6 staff members at the table who would want to trade places with her.  No one would even look me in the eye after I asked that.  It's hard enough to watch your parents slip away, but to have to fight to let them die with dignity and be made to feel like a criminal was beyond belief.  

Our advanced directives got a lot more specific after I went through this twice.  If I get Alzheimer's, I don't even want antibiotics if I get a cold.  Nothing, nada.  Heaven is way better than dementia.


----------



## MuranoJo (Aug 23, 2010)

Same thing for an aunt I loved dearly.  She clearly specified DNR, her doctor and the hospital had the signed instructions.  Three times, THREE times, they intubated her.  Finally, she was put in Hospice and passed away about 2 mos. later.


----------



## Rose Pink (Aug 23, 2010)

MelBay said:


> Not until we got her on hospice did all the heroics stop. Even then I had to reign them in sometimes. ...  Heaven is way better than dementia.


 


muranojo said:


> Same thing for an aunt I loved dearly. She clearly specified DNR, her doctor and the hospital had the signed instructions. Three times, THREE times, they intubated her. Finally, she was put in Hospice and passed away about 2 mos. later.


 
That's good to know.  I didn't get the feeling today when I signed the papers that this facility would do that but I will pay more attention.  They did say they would call me if anything came up and I could make decisions on a case by case basis.  I wasn't sure about the antibiotics.  Dad is still alert and oriented.  If he were completely lost, I wouldn't hesitate to specify no treatment including no antibiotics.

I admitted him today and cried through the whole thing.  I know I did the right thing.  I just wish I didn't have to be the one who did it.  Three years ago I promised him I would never put him in a nursing home.  Shouldn't have made such a rash promise but I didn't know then how things would work out.  I'm very grateful that we were able to have him in our home this summer.  And I am even more grateful that there is an excellent care facility close to my home so I can visit him often--and that he can afford it.  The admissions person was very sensitive and had no problem lying to him, "your doctor wants you evaluated and medicare is paying for it."


----------



## Liz Wolf-Spada (Aug 24, 2010)

I just got back from a short trip. Rose Pink, you have dealt with so much lately. My dad passed away from Parkinson's in 2008. It was so hard to see him cope for years with the lack of understandable speech, even though I knew he was thinking of what he wanted to say. He finally died from lack of swallowing. He indicated clearly he did not want a feeding tube or an IV for fluids and although I was very concerned about his comfort level, the hospice nurse told us that he would be comfortable and he was. He was at home with 24 hour care, fortunately, he and my mom had both a long term care policy and a good income. All 3 of us kids got to see him the night he passed. I still miss him so much. If he doesn't want a feeding tube or IV for fluids to prolong life, I think it needs to be written down and clearly posted unless he is in hospice care.
Liz


----------



## glypnirsgirl (Aug 24, 2010)

Rose Pink said:


> Once he gets over the shock of the move, I think he will enjoy the attention and activities--IF he can stop worrying about the money.  He told DD tonight that he couldn't get a job any longer to earn money to pay for it.  When she told him he already had plenty of money, he said he'd already promised it to his children.  And round in circles we go--again.



One of the things that I found that helped my father in law was to still have his wallet with pictures in it and a few dollars. As he declined, cash was the only money that he understood and several ones was more reassuring than a big bill. He did not have any place to spend it, he just liked having it.

elaine


----------



## MelBay (Aug 24, 2010)

Double post


----------



## MelBay (Aug 24, 2010)

The cash and wallet is a great idea.  My mom was always terrified of being broke, so I made sure she  always had a few bucks.  Many times when I checked it was gone (she had no place to spend it so I assume it was...   ) but it was worth it to me to replenish it each time.  

Hang in there.  You're a real saint. And keep us posted.  I always enjoy your posts.


----------



## dgdbloe (Aug 25, 2010)

My prayers are with anyone helping or taking care of someone with AD. 

I took care of mom with that dreadful disease after dad passed. Have a sibling who did nothing but visit once a week(maybe) for 10 minutes and got irritated with mom and snapped at her.
I never had to make the decision to put mom in a facility(though I should have) it was made for me once mom fell,broke shoulder and needed to be in facility for pt.  She went downhill quickly from there.

Being with mom most of my waking day took me from hubby,kids,house,and job and depleted savings and I would do it all over again without a 2nd thought.

Mom being in a facility didn't make life any easier(except to sleep a little better at night) as she would cry for hrs unless I was there,would not partake in any social events w/o me,wouldn't even try food served unless I ate as well with her and she had many UTI's that I would catch the early warning signs before staff so I was afraid to miss a day.

She also needed to know she had a few dollars in her wallet and  needed to know her purse was close by. Before falling she loved to walk and go out w/me daily so even at her weakest state she wanted to be sure her sneakers were close by. Sometimes it made her happy just to have them on(even in bed). Guess it made her feel the possibility of going out was there and made her happy.

In the end her brain just stopped letting her know she was hungry and she stopped eating always saying she was full. After many rounds of IV to rehydrate her only to have her refuse food again I realized I was being selfish keeping her alive by IV. I brought Hospice in for quality end of life. Hardest thing I have ever had to do in my life and still question myself about it. I was lucky enough that before morphine was increased I had 2 good days with her the way she was yrs ago. She told me I was a good daughter,she loved me,to make sure I was the one to handle her affairs and she hoped she was a good mom. We had the most lucid conversations we had in yrs. Calm before the storm.
When she passed I felt it was the 2nd time mourning for her as for yrs I had mourned the mom I use to have.

It is not easy caring for someone with AD or being the one to oversee the caring. Just be patient,know it's not their fault,not your fault and you can't fix it. 
If you tell your loved one something that brings a smile to their face or makes them laugh tell that same thing over and over again. You may tire of it but they won't. Don't try to force them into your world but step into theirs.
Repetition helps. Mom loved to fold towels over and over again and even in facility loved folding things so staff would bring towels,her clothes and johnny's. 
When able mom loved to string cherrios on yarn and then hang out for birds. I'd make a "needle" out of end of yarn w/a little glue.

I know it's hard and you think you just can't do this for one more day but look into your loved ones eyes for that glimmer of who they once were,if they like contact then touch them often. A confirmation of your hard work may be slight,few and far in between but it lets you know you are doing the right thing,you are appreciated and most of all making their very hard life a little better


----------



## Passepartout (Aug 25, 2010)

dgdbloe said:


> It is not easy caring for someone with AD or being the one to oversee the caring. Just be patient, know it's not their fault, not your fault and you can't fix it.



Thank you for this beautiful post. You said a mouthful. My Mom didn't have AD, she was a stroke survivor and her eggs were pretty well scrambled too. I spent several years with her life ahead of mine. The end result was the same. I don't regret a minute of it.

Jim Ricks


----------



## dgdbloe (Aug 25, 2010)

Jim   

Didn't want it to seem that I think only caregivers of AD loved ones have a gut wrenching time.  Being a caregiver of anyone is so difficult and made harder when the mind is affected and they really can't make any decisions .
Those decisions a caregiver has to make are haunting,the time taken away when we put them 1st can never be replaced but it sure helps to know you did all you could  and hopefully brought them some comfort.


----------



## vacationhopeful (Aug 25, 2010)

Rose Pink said:


> At ... times he calls me by his daughter's name, not my name. I chalk it up to dementia....



My Dad used to get me and his sister (my aunt) confused via names and physical presence. The live-in aide knew this (as did I) but it confused my visiting siblings terribly. Auntie was profitting on his confusion by visiting and taking sentimental things for safe keeping to her house.  

*Funny Story:* My sis with her MPOA had just checked Dad out of a 7 day hospital stay and we immediately departed for another state (we rented a  nurse's aide in her uniforrm to assist in our plan). Crazy Auntie shows up at hospital and finds his bed stripped. Throws herself on the bed, whaling how no one had called her about her dead brother. Floor staff comes running and say that the family had moved him to local nursing home via presence of this aide. Auntie drives to nursing home where they have no idea what she is talking about. She calls the police to nursing home and forces a census with herself, police officer and nursing home manager (physically checking each resident).  It only took us 20 minutes to drive to the next state. Can you guest the reason we had to move him to another state?


----------



## macko420 (Aug 25, 2010)

*High thyroid levels and alzheimers/dementia*

Hi,
I'm not sure if this is the right place to post this or not but we just found out that my mother, age 76, who seemed to have a sudden onset of dementia about 2 yrs ago was just told by a neurologist that she has such a high level of thyroid hormone that this might be what is causing her short term memory problems.  She repeats the same question many times in a short period of time, and has trouble remembering where things go in the kitchen cabinets but knows everyone, knows what everything is, can carry one a resonable conversation and remembers important things like she will be a great-grandmother next winter.  Back to the dr.....she 'mentioned' that if indeed this is the problem, it could be treated by knocking out her immune system since she says that such an excess of thyroid hormone causes the body to attack the brain.  And  of course there are risks.  I thought the treatment for overactive thyroid was surgery to remove it.  She is to have an MRI, EEG and ultrasound with a return appt in Oct.  I'd like to understand before Oct.
Has anyone heard of this before or have some idea of what she might be talking about.


----------



## camachinist (Aug 25, 2010)

Hyperthyroid dementia

The first aspect of diagnosing a dementing disease, especially AD, is to eliminate as many physical, potentialy reversible, causes as possible. AD is generally a disease of exclusion. Exclude every other possibility and AD is what remains.

Hyperthyroid dementia would/could fall under what I would call 'potentially reversible dementia'. There are many such conditions whose symptoms mimic AD, VaD and FLD. 

A dementia specialty team is one aggressive way to diagnose and treat symptoms. They attack the problem from the physical, psychological and genetic perspectives in a coordinated effort. The team at UCSF, in my prior example upthread, is one such team. Very thorough and very effective.


----------



## macko420 (Aug 25, 2010)

Well that sounds encouraging but I'm still wondering why they would need to knock out her immune system.  I'll keep reading about it and maybe I'll hit upon something.  Thanks for the info.


----------



## camachinist (Aug 25, 2010)

Tip: If something doesn't sound right, get a second opinion. I was flailing around aimlessly until I found the docs at UCSF. 

On a good note, mom had her eyes open today and was moving around a bit. Not much fluid intake so she's still declining but at least she appears comfortable. The facility was training CNA's for crane transfers with the lady in the next bed and I enjoyed talking to the students and watching them interact with the patient. Finalized her funeral arrangements. Kinda wierd doing that.

My opinion is that there are blessings in every challenge. All we have to do is find them. I saw a bunch of them today in the eyes of the young students. With endings there are new beginnings.


----------



## Rose Pink (Aug 28, 2010)

*To the OP*



applegirl said:


> ... Soon we are likely faced with putting my grandmother in an Alzheimer's care facility. ...Janna


Janna, do you have any updates for us?  Have you found a place you can feel comfortable with?  I am keeping you in my thoughts and hope you can find peace with your decisions.

A friend of mine who has worked in a SNF told me that it is important for family members to have a regular presence at the facility.  The more the staff sees you, the more attention your loved one will get.  You don't want to be hostile or demanding but just let them know you are there.

Best of luck to you.


----------



## pianodinosaur (Aug 28, 2010)

*Predators of the Demented Elderly*

Many of my patients with dementia develop the problem gradually.  They slowly lose the ability to manage their financial affairs.  There are numerous predators who obtain lists of people in a community, such as ours, of people over the age of 80.  There is about a 1 in three chance that such an individual may be developing some kind of dementia.  These diabolical monsters approach such individuals and have them sign over power of attorney.  All of a sudden the will is changed and the predator is getting all the social security checks mailed to him.  I have seen several elderly people lose their homes because of this scam.  It is all perfectly legal.  When the families find out that granny is out on the street, they have to prove that she was incompetent at the time she signed over power of attorney if they want to regain control over granny's assets before they are completely stolen.

The usual way I get involved is that granny or grandpa is urinating all over the floor. The family is convinced that the problem is the bladder.  However, granny or grandpa do not know who the president is nor can they subtract 97-3. When I suggest that there may be a dementia, the family becomes hysterical and say that my father or mother is as sharp as a tack.  The family then goes doctor hunting.  Two years later they want my medical records to prove that granny may have been demented at the time she signed over power of attorney to some predatory monster. However, by that time, it is too late.  Denial ain't just a river in Egypt.


----------



## Rose Pink (Aug 29, 2010)

pianodinosaur said:


> The usual way I get involved is that granny or grandpa is urinating all over the floor. The family is convinced that the problem is the bladder. However, granny or grandpa do not know who the president is nor can they subtract 97-3. When I suggest that there may be a dementia, *the family becomes hysterical and say that my father or mother is as sharp as a tack.* The family then goes doctor hunting. Two years later they want my medical records to prove that granny may have been demented at the time she signed over power of attorney to some predatory monster. However, by that time, it is too late. *Denial ain't just a river in Egypt*.


Fought that battle with my SIL (Dad's daughter).  I had five or more docs say he had dementia (although they disagreed on which type) and she still didn't believe.  I explained to her, among other things, how Dad couldn't complete the clock drawing.  She then sat him down in his own house and had him draw a clock.  Voila!  He could do it according to her.  Her explanation: Dad was just nervous at the doctor's office.  

She just didn't understand dementia (and I had to struggle with it myself).  Dad is alert, oriented and knows who we are.  He can repeat what he's heard on the news. He remembers some things better than I do.  But sometimes things don't add up.  I think we fill in the blanks for them and that is why we have trouble recognizing dementia.  It isn't all or nothing.  And, sometimes, we just don't _want_ to see because then we are obligated to do something about it.

I realized that Dad had trouble problem-solving.  Tell him three things and he couldn't juggle them all.  I started monitoring his bank account on-line.  He did pretty well most of the time but didn't step outside the norm.  He continued to write checks for his usual bills but couldn't always find them on his bank statement (they were there). We warned him repeatedly about door-to-door salesmen and scams. It worked to his advantage that he has always been very frugal and reluctant to spend money.  Finally,  he realized that numbers weren't always making sense to him and he handed over his finances to me--against his daughter's advice.


----------



## Rose Pink (Aug 29, 2010)

glypnirsgirl said:


> One of the things that I found that helped my father in law was to still have his wallet with pictures in it and a few dollars. As he declined, cash was the only money that he understood and several ones was more reassuring than a big bill. He did not have any place to spend it, he just liked having it.
> 
> elaine


 


MelBay said:


> The cash and wallet is a great idea. My mom was always terrified of being broke, so I made sure she always had a few bucks. Many times when I checked it was gone (she had no place to spend it so I assume it was...  ) but it was worth it to me to replenish it each time.


 


dgdbloe said:


> Mom being in a facility...also needed to know she had a few dollars in her wallet and needed to know her purse was close by.


 
I thought I had dodged this bullet.  The facility does not want the residents to have such valuables for obvious reasons.  I did not want Dad to have his picture ID because the facility is only yards away from a branch of his bank.  It would be all too easy for "someone" to take Dad out for a field trip and have him withdraw cash from his account.

Well, today Dad asked about his wallet and said he needed it in case he had expenses and that Christmas was coming up.  I told him I'd bring his wallet.  I will try just putting in some cash--he is used to having twenties and I'm sure he'll notice if there are only ones.  I am not worried about a few bucks being stolen.  I am worried about the picture ID allowing him to be identified at the bank branch.  I know he'll notice if it is not there.

Today, just before lunch, a cute little lady wandered into Dad's room and told me she was hungry.  I invited her to come with us as we were going to lunch.  As we walked to the dining room, she commented on how nothing looked familiar to her (all the halls look similar and Dad gets lost whenever he leaves his room).  Then she asked about paying for the meal since she didn't have any money with her and she didn't want to be embarrassed.  I assured her that we had been invited and so we didn't need to pay.

I can try telling Dad that there is nothing to spend money on where he lives but that won't take away the nakedness he feels without his wallet and some cash.


----------



## glypnirsgirl (Aug 29, 2010)

*NO picture ID!!! No credit cards!!!*

NO picture ID in the wallet - just pictures. You are absolutely correct that the items in the wallet will go missing - that is not an if. I had to restock George's wallet periodically and there was nothing for him to spend money on. Your FIL is still lucid enough to get the concept that you will take him out for Christmas shopping. His picture ID and credit cards need to stay with you. His wallet (without ID and credit cards) and a few bills can stay with him.

I do not know how we came up with the concept of the wallet with pictures and a few bills in it worked, but it did. Your father in law can still get the concept that someone can steal from him so that the credit cards, ID and big bills will stay with you - you can get a new or different wallet for his "going out" wallet that has his ID, credit cards and more money in it. We did this and it worked great.

When we would take George on outings with us. We would give him his "going out" wallet the one that he knew that we kept locked up in our safe at home.  The first few times, we would pick him up, go by the house, ceremoniously unlock the safe and let him get out his "going out" wallet and put it back away before returning to the nursing home. As he got more feeble, we would just bring it with us and ask for it for putting it in the safe as soon as we got back to the nursing home. I was always afraid that he would get re-attached to it if we left it with him for even a few minutes once we got to the nursing home.

We would normally pay for meals when we went out. But sometimes he would want to do so. With his credit cards intact in his wallet, he was able to do that.

elaine


----------



## Rose Pink (Aug 30, 2010)

Someone at the nursing home suggested play money but I told them Dad would notice.  She said there are some very realistic looking fake bills but wasn't sure where to find them.  Anyone know?  (and I'm not talking counterfeit, haha)


----------



## CarolF (Aug 31, 2010)

Rose Pink said:


> Someone at the nursing home suggested play money but I told them Dad would notice.  She said there are some very realistic looking fake bills but wasn't sure where to find them.  Anyone know?  (and I'm not talking counterfeit, haha)



If you have the time  , use a coloured photocopier.  Copy money and his cards.  If your copied money looks counterfeit, put a little sticker on it (before copying) with tiny writing explaining that it is for the express use of Mr. ..... (or something that makes it clear you are not attempting to break the law).  Try laminating the copies of the cards for a more realistic item (trim the corners so he doesn't scratch himself).  Make lots of spares too, they will get borrowed.


----------



## CarolF (Aug 31, 2010)

*Open your eyes and SEE.*



Beaglemom3 said:


> Janna,
> .....  This may sound odd, but while visiting a facility, look, listen, feel and_ "sniff"._As a 30+ year nurse (RN/NP), I know that this is a tell-tale sign of good or potentially bad care. Do it on return trips to make sure that they weren't having a rare, bad day, understaffed day as it does happen in even the best of places. If the staff is hanging around chatting whilst the residents are leaning over in wheelchairs, ask why. If the smell of urine persists, ask why.
> 
> I shopped around for a good place for my Mum, unfortunately, I was taken in by the first one that had oriental rugs, nice chandeliers, floral arrangements in the foyer. They gave a great first impression, but neglectful care despite a high state rating. I took her out of there and brought her home until I could no longer transfer in/out of bed safely. I found a great place and she has been there for 3 years now and is well taken care of.
> ...



Janna

Beaglemom3 makes some very important points which I would like to add too.  It is important to _thoroughly look _at the residents when selecting a home.  Talk to residents if you can and check the following - 

Can they hear?  If a hearing aid is fitted does it have a working battery?  
Can they see?  If they have glasses are they clean and within reach if they are not wearing them?  
Are their teeth clean?  Is their face clean?
Are their false teeth fitted, and if so are they fitted comfortably?  
Are they dressed appropriately for the weather, is their skin cold to touch or are they red in the face?
Do they smell of urine, body odour, dirty dentures, greasy hair, UTI.
Are their fingernails trimmed and clean?
Is their hair clean and brushed?
Do many of them have bruises?
Is their incontinence pad so full you can see it sagging when they walk?
Are their walking aids placed within reach if they are sitting down or do they have to walk to get them?
How many are underweight?
Are the 'busy ones' happily occupied (folding clothes, nursing dolls, playing with 'toys')?
Are there a few too many zombies?

Hope this helps.

Oops, just realised that this is an old thread.  My apologies everyone  . Thought I would leave my post anyway in case it is of use to anyone.


----------



## Zac495 (Aug 31, 2010)

Liz Wolf-Spada said:


> Ellen, is your dad getting treatment? If he isn't he should see a doctor and get started on the Alzheimer's medications. They can't cure it, but they can help it be more manageable and less symptomatic. I saw a lot of improvement with my mom with the Nameda, although the doctor did tell us we would need to  observe and note all the changes, because it is by observation of caregivers that he would find the right dose.
> Liz



No, Liz. We're not sure it's Alzheimer's and we don't want to know. So far he's doing okay - he can still play bridge, carry on full conversations, etc. If he found out that he did indeed have it, he would become so depressed. We're riding it out for now... I will remember about Nameda if and when the time comes. Thanks, Liz.


----------



## Rene McDaniel (Sep 1, 2010)

Oh my.  I have learned so much from reading this thread.  Thank you to everyone who has been so generous in sharing their knowledge, recommendations, and life stories.  

Just in reading this thread, I think our family needs to be more involved with my father-in-law.  He is 89, and I have noticed that although he does well in most things & does not have any health problems -- he is not really able to make decisions anymore.  Restaurant menus overwhelm him, and he'll just order whatever you're having.

A widower who did not enjoy being alone, he's now got himself a new love and moved into her apartment in the city.  She's a real sweetheart, also in her 80's, and they seem very happy together.  But, we (the family) worry about his finances.  We have always encouraged him to hang on to his house in the suburbs.  It's his nest egg, should he need money for care at some point.  We worry that if he sells that house now, the money will just somehow just be gone, dwindled away, swindled -- many bad potential outcomes.  

Reading all these posts, I can understand how his house is probably a huge burden that he would like to be done with.  But how to do it while keeping that huge pile of cash safe from swindlers, or donating it to his church, or just being frittered away?  He is always going to those awful free financial planning seminars, even though we beg him not to.  He's drawn like a moth to the flame, and  it's terrible the way those guys absolutely PREY on seniors.  He seems to be forgetting that the house/money is for his long term care.

To all of you who have been taking care of your loved ones, may God bless you!  You are awesome, and you inspire the rest of us.

--- Rene McDaniel


----------



## Passepartout (Sep 1, 2010)

Rene McDaniel said:


> Reading all these posts, I can understand how his house is probably a huge burden that he would like to be done with.  But how to do it while keeping that huge pile of cash safe from swindlers, or donating it to his church, or just being frittered away?  He is always going to those awful free financial planning seminars, even though we beg him not to.  He's drawn like a moth to the flame, and  it's terrible the way those guys absolutely PREY on seniors.  He seems to be forgetting that the house/money is for his long term care.
> --- Rene McDaniel



Probably time to be setting up a conservatorship. Not so much to keep him from having what he needs/wants (it's HIS money), but to assure that he has enough for his lifetime needs. Most seniors have days when they are more lucid than others and you- or another trusted loved one- can discuss it with him and an experienced elder-law attorney. Tell him it's another financial planning seminar- just a one-on-one session.

Welcome to the world of elder-care.

Jim Ricks


----------



## Rose Pink (Sep 1, 2010)

Passepartout said:


> Probably time to be setting up a conservatorship. Not so much to keep him from having what he needs/wants (it's HIS money), but to assure that he has enough for his lifetime needs. Most seniors have days when they are more lucid than others and you- or another trusted loved one- can discuss it with him and an experienced elder-law attorney. *Tell him it's another financial planning seminar- just a one-on-one session.*
> 
> Welcome to the world of elder-care.
> 
> Jim Ricks


Good advice.  Everyone's circumstances are different and we all have different tolerance for risk.  A reliable elder attorney is a good start to find out what is available to you and what measures you need to take in your state. Whether you go with conservatorship, a family trust, or some other legal tool, it needs to be legally set up and the family should be aware of it.  Powers of attorney were/are invaluable to me in dealing with my FIL's finances and medical care.  I have both durable and medical POAs.

Because your FIL has a girlfriend, you are not only dealing with your own family members but hers as well.  Without properly setting things up and watching like a hawk, her family could end up with all his assets.

Money is a seductive thing.  As Jim says, it's your FIL's money.  But, when you assume responsibility for managing it, it can seduce you into thinking it's yours.  There is a reason nice families fight nasty over inheritance money.  Just keep reminding yourself that it is his money, it is his money, it is his money.

I don't know how involved you already are with his finances but you may be in for a shock.  Do you know for sure whether there are any second/third mortgages?  Liens?  Reverse mortgage?  What does he have in the bank?  Under the bed?  Tucked into picture frames?

For your own protection, you need to know these things and be able to at least look at his bank accounts on a regular basis.  I check my FIL's accounts on-line daily--and I clearly let my SIL know I am watching.

I started about 8 years ago--long before dementia was a diagnosis--to set up legal tools for my FIL.  At the time, I wasn't even thinking he would become unable to manage on his own.  I was watching out for a BIL with mental illness issues.  I knew if he got a windfall, his "friends" would relieve him of that burden in less than a week.  Setting up a trust to dole out said BIL's inheritance a little at a time was my goal.  The lawyer also set up the standard POAs, etc.  Little did I know how useful those would become.


----------

