Dealing with Alzheimer's in the Family

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

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.

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

Thanks Denise, I will check out that forum!

Janna

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

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.

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

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

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.

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

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.

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

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.

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

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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.

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

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

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

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.

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

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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.

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.

Regards,
Janna

Click to expand...

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.

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

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.​

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.

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.

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.

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.