Dealing with Alzheimer's in the Family

[Cathyb]

Update on DH

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]

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]

Liz

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

..... 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]

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]

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]

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.

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]

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]

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]

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

 

[Rose Pink]

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]

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]

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]

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.

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]

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]

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.