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My husband's neurologist warns me against waiting until he has lost most or all of his short term memory, a stage which he is fast approaching. He has early onset Alzheimer's disease so we are both fairly young and I have no problem taking care of him. Putting him in a memory care facility will be the most difficult thing I will ever have to do.

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The belief is that everyone needs to be in a facility, and you can adjust better when you take an active part in the decision making, and you are better able to adapt at an earlier stage. While that may be true it does not mean you should rush him off to a facility if you have enough supports to care for him at home.
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Oh my, I can't imagine. This must be so difficult for you both. I placed my LO, but, it wasn't my spouse. That is much different. What does he say about it? Is he able to discuss it?

My LO, (cousin) had no short term memory when I placed her in a regular AL. It was challenging, because she could not learn anyone's name. She also could not recall where things were located. And she felt out of place, because, she couldn't follow conversations and she repeated things over and over. Other residents were not able to tolerate too much of this. She would forget where she was going on the way to the dining room. She couldn't remember to pull call chain in the bathroom. It's a struggle for them due to these things, especially, if they don't have a lot of supervision. So, there is a lot to consider. But, I couldn't get her to go before this point, so, we had no choice. Her doctor insisted at this point, as she could not live alone safely.

She encountered the same issues at Memory Care, which is where she moved to soon after her stay at AL, except the MC staff were better equipped and the other residents were more accepting and shared her struggles.

I would have a facility in mind though, because things can change quickly and you may encounter odd behavior, sleep disorders, agitation, incontinence, resistance to care, etc. These are not uncommon and its' stressful for the caregiver. I would go tour the place without him first to get an idea of what it's like. I'd be prepared though, because, you may see people that you think are much more progressed than your LO. The only thing is that the progression can occur quickly and things change from week to week.

I agree about finding a support group. Do you have family and/or friends to help you through this?
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Thank you for all your wise advice. I do know of a support group and will now make an effort to participate in it. My three children are very supportive but leave all decisions on their dad’s care up to me. None of them would object to my placing him in a memory care facility. We’ve had those conversations. My husband is unable to understand the issues involved so trying to discuss this with him would only lead to agitation and frustration. I think he would be much like your cousin, Sunnygirl, in adjusting to a facility. I’ll plan on visiting some area facilities in the next few weeks. Good advice on being prepared for a sudden downturn. His progression has been fairly slow up until now but that doesn’t mean it won’t accelerate sometime in the future. I’m wondering if I’ve already waited too long.
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Early Onset is no reason to rush to put him into a home.

Is he on Aricept? If not, why not??

My father had Early Onset for the last 5 years of his life and it never progressed. He passed at 88 when he decided to stop Dialysis. His Aricept was never increased. He was able to function and lived on his own til his last breath. Yes, he was in a mobile home in my front yard - but he still lived alone.
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Tea4Me, when you said Early onset and that you both were young, I think that I was thinking about Young Onset dementia. I'm not sure about the difference in that and Early Onset. Still, I'd prepare for what you might encounter. Only you know how much you can handle. Unless you care for a person who has significant dementia, it's hard to describe. The constant stress and anxiety were the worst for me. It's much more than someone forgetting things. It's sleep disorders, agitation, repeating, resistance to bathing, dressing, taking meds, pacing, wandering, incontinence, etc. I hope that you find what you are looking for. This place is a great place to come for support and tips. I learn something here every day.
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This is a tough one. I was told not to wait too long but just couldn’t place my Mom. I think you will know when there’s no other choice. If I had moved her earlier, she would have begged me to bring her home. By the time she moved to a dementia facility, she had progressed to the point she thought I lived there too! Trust your intuition.
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according to: https://m.alz.org/younger-onset-alzheimers.asp
"Alzheimer's is not just a disease of old age. Younger-onset (also known as early-onset) Alzheimer's affects people younger than age 65. Up to 5 percent of the more than 5 million Americans with Alzheimer's have younger-onset."
So it appears that Early and Young onset are one and the same. Not sure how someone at 83 would be considered to have early onset, but whatever the doc says, eh? Our mom has dementia (no idea if it is Alz or not) but was in her early 90s when it started.
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For Tea4me - the decision whether and when to place someone in MC or not is really very personal. IF you feel you are up to the task you could keep him home. Not everyone is cut out for care-giving in this respect - it is a very tough (progressively) and mostly thankless job and I knew I could not manage it (mom, not a spouse).

If your home is or can be made safe and has/can have all the bells and whistles that might be needed (safety bars/bath seat, block off stairs, prevent wandering, etc) AND you have the finances to support in-home assistance (eventually you WILL need help as it becomes a 24/7 job), AND you can handle it, you might consider letting him remain home (at least as long as possible.)

If you cannot see yourself being the care-giver for long, then yes, start checking out places now. Find the one that you feel HE would like best (bring the kids along for support and input as well, even though the decision is being left in your hands.) When you narrow down the selections, you could take him for a visit and see how he reacts. Definitely do not discuss financials and probably best just to say you are checking on future living arrangements for BOTH of you... We let mom think the VA is paying (we are applying for benefits, but it doesn't cover the cost!) That is another option to consider - if he qualifies there are multiple options (in-home assistance, monetary assistance for MC or even VA places.)

As far as when, that is really up to you. AL should not be considered as there are no real safeguards for memory impaired residents. Moving to MC for people with dementia can be early or later - it depends on how well the person functions. If they just need help remembering when/what to take for medications, YOU dispense them or use a locked pill dispenser. The repetitive questions and statements you learn to redirect focus or change the subject, etc. When it becomes too difficult for you, then you either bring in help or make the move. In-home help can also be used if there is a waiting list for the facility you choose.

Whenever the move is done, regardless of the stage, the person is going to have issues "adjusting" and may never accept this as their home. That you will have to accept and deal with on your own (or with support group.) If you set up his room there with as many "memorables" as possible, familiar chair, bed, books, etc, he may adjust a little better.
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Sometimes putting notes or signs on things as reminders can make life easier. However, people with memory issues might not bother to read them and absorb the information. I have had some success with my mother--at least it often saves my having to answer the same questions.
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All of us who have dealt with placing someone in a facility will have this sort of guilt following us forever. And, if we had waited and something happened, that’s guilt too. I can say, as far as being my husband’s sole caregiver, I had absolutely no idea what full- time caregiving was like until the responsibility for his care was dumped on me. I love my husband and he has given me a comfortable life, but I heartily resent this responsibility and at times, him as well.

Make your plans now. Research and tour facilities. Use more than the internet to make your decisions. So often the photos on the web mislead one into thinking the place is just gorgeous when it’s not. Keep him at home as long as you can, but don’t extend the time beyond what you can handle. If we had the financial resources, we would definitely at least be in Assisted Living by now.
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You can also make the very tough decision to keep him home.
I decided that I would keep my Husband home as long as it was safe for him and for me.
I decided that the cut off would be if he tried to hurt me or became violent in ANY way I would have to place him
I made the house so it was safe for him. (I am VERY lucky that the house was built handicap accessible)
He was compliant throughout his illness.
Early on he was in Adult Day Care. When he could no longer attend (he tried to leave) I placed him in a Memory Care facility that did Day Care.
When he got to much for them, they have full time residents that are a priority, I got caregivers to come into the house.
As he declined more I was fortunate enough to have the VA help with a program that would help pay for more time with the caregiver. The most difficult thing was finding GOOD caregivers.
At one point I decided to call Hospice to see if he would qualify. He did and he spent the next almost 3 years on Hospice. So with the help of the VA and Hospice I was able to get all the equipment that I needed, the help that I needed and the supplies that were needed.
As long as there is a documented, continued decline a person can remain on Hospice. It is not just 6 months. I think what qualified him from the start was the fact that he had broken a hip within the previous 6 months.
So the question for you is ...rather questions...
Can you care for him at home?
Are you physically able to care for him?
Is the house set up for it?
Do you have help?
Biggest question is what type of relationship do you have?
Will you and he be willing to let someone come into your home and care for him?

There is a big cost factor.
The expense of Memory Care is high
The cost to your social life, the cost of renovations if necessary can be high, although some can be offset by a variety of programs.
The cost of Caregivers is less if you hire privately but the consistency of an agency is reassuring. (hired by you, a caregiver calls you at 7am and says they are having car trouble and can't come in, an agency on the other hand can send another caregiver to you)

Ultimately the only one that can answer is you.
But from friends I have talked to ...by the time you place someone it is already past the time. By that I mean that everyone says ..."oh, I shoulda done this sooner"
I will say a little prayer for you tonight since you can use a little more help in answering this question...
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There is something I wish I had done for my mom that you might try..... when she no longer could understand why my dad was in bed from a heart attack (and couldn't take her out to eat) and me living there for 2 mos completely threw her routine off and she became violent towards my dad which she would have never done in her right mind, that's when I had to place her in a facility for my dad's sake and my sanity (since she never slept). What I thought would be a couple or three weeks for us to catch our breaths became 7 long years. Here's what I wish I had known (but I was desperate at the time) look into adult daycares or respite day/night care at a facility. I don't know what part of the country you live in but Texas has them both. Unfortunately I didn't know about adult daycare until it was too late. Each day for a few hours or just a couple of days a week (you decide and depending how your husband does) they go and are around others like them but they do things that are of interest to your loved ones or at least they try really hard. Check into different facilities about respite care also. At my mom's place they had a couple of people that were dropped off in the mornings when the people had to go to work and then would be picked up afterwards. Sometimes it works out and sometimes it doesn't. But it's worth a try to give yourself a break. It's very hard on a body to keep on top of things and to do everything yourself. It's like taking care of a toddler.....only with them you pick them up and take them away from danger. That's why God let us have babies when we are young :)) I have been care giving for 10 years. My in-laws (deceased), my mom(deceased last year) and my 95 year old dad who is declining. I lost my sister 3 years ago.

It's hard to watch someone you love and someone who was so on top of things lose their memory day by day. I agree with the posters.....all you can do is be prepared. Each person's chemistry is so different. It can go slow as in my mom's case or it can go fast as in a friend of mine's dad. Supports groups are great and have a lot of information plus you will be with people in your area that you can reach out to but don't forget about us too. I have gotten several great ideas from all of the different care givers and and their situations! Good Luck and may God Bless
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Of course, being proactive is always better than being reactive. The elder will age-that is a given. It is likely that they won't miraculously "need no help."
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Thank you all for taking the time to write such thoughtful, informative answers. To give you a clearer picture of my situation, my husband is 69 and was diagnosed with "Alzheimer's type" dementia at age 64. I had first suspected dementia when he was 58. I am 66. My husband has been on Namzaric for three years now. I had placed him in a once-a-week daycare (excellent program) specifically designed for people with dementia but he fought me every week about going and I finally gave up after five months of his complaining.

In addition to caring for my husband I had been caring for my mom in our home for the past four years. She suffered from congestive heart failure. During her four years with us she had her ups and downs, good times and some hospitalizations. Six weeks ago she was hospitalized with bronchitis and became very weak (she was 96). I brought her home under hospice care and hired round-the-clock caregivers through an agency. They were wonderful. Mom grew progressively weaker and two weeks ago she passed peacefully in her sleep.

Although we had a good experience with hired caregivers, I don't think that would be a good solution for long-term care. When I feel I can no longer care for my husband I know I will place him in a facility.

From reading all your good suggestions I think the best course of action would be for me to join a support group and to start visiting memory care facilities in my area. I feel in my heart that the time of my placing my husband is months away, not years.
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Tea4me.....I am so sorry for your loss. So you have been care giving at both ends, your mom in home and your husband. I'm also 66 and am pretty worn down from all the drs. visits, phone calls, and at 95 we just sold my dad's car. Now I drive 30 minutes almost every day to stay on top of things or to take him to do "errands" (rolling my eyes:)) He lives in a retirement community, one side independent with meals, housekeeping etc. the other side is full assisted living which will not be long that he will need that.

My mother's roommate in her Alz/dem facility was 60 years old. Symptoms for at least 5 to 8 years before her husband could no longer take care of her. It always shocked me because that's so young as in your husbands case also. My mom didn't start showing symptoms until she was in her mid to late 70's. Up until then she was so vital, intelligent, humorous, so active and ALWAYS dressed to kill. It was hard to watch and be there. My sister (who passed away at 64) could barely make herself go see her it hurt her so bad. My dad, well, the same thing so it was up to me or another way of putting it......I think God put me in this place to be a care giver to everyone and everything. Seems that's how it's gone the last 10 years. I always tell my husband that my retirement fantasy doesn't look quite like I thought it would 20 years ago. But things change don't they? And life?? Well, it's a heck of a ride. Hang On.....

Again, I'm sorry for the loss of your mom and going through this with your husband. Many Blessings to you
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Pargirl, you certainly have a lot on your plate. I have also thought many times that this is not what I had envisioned for my retirement. But I believe things happen for a reason and so much of life is unpredictable. As you so well wrote, life is a heck of a ride. All we can do is make the best of our situation. You hang in there too.
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Tea4me...
Right after I retired from my job my Husband was diagnosed with Alzheimer's.
Not the way I expected our retirement to go I can tell you that.
All the travel plans we had, the travel dreams we had I should say never came to be as travel became difficult.
Day Care helped a lot.
My Husband was a Veteran so I did get him set up with the VA and I can not begin to express how much help they were with a variety of programs that enabled me to keep him at home. From the Day Care option to the Respite days where I was able to have someone come into the house once he was no longer able to go to Day Care. Then eventually to a program called VIP that the goal is to keep Veterans in their homes and independent then when I was no longer able to safely get him into the car the Home Based Primary Care had Doctors, Nurses and Social Workers that came to the house.
If by chance your Husband is a Veteran contact the VA or in many areas there is a VA commission office with people that will get the paperwork started to determine how much help they can provide. And for Vietnam era Vets there is a LOT of help available as many have many illnesses that can be traced to chemicals used. These are illnesses that you not suspect would have a connection.
So if your Husband is a Veteran call the VA.
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No. My dad had Alz for 11 years and passed at age 85. My mom cared for him 9 of those years. It wasn't until he was going into about stage 6 where he became incontinent, and overnight could not walk anymore. She was not strong enough to turn him over or lift him, and could not afford 24 hr care. At that point, like within 5 weeks of not walking and going to the bathroom on his own, he was put into a full time care center that was really good to him. It was the hardest thing we ever did but it had to be done. They have a much better quality of life at a good nursing home. They have activities, outings in a van, parties all the time, crafts, hired entertainment, etc....Sitting at home in the later stages not being able to care for themselves, watching TV all day or in bed, inside, that type of thing, is not a good quality of life. We were with dad almost every single day the 3 years he was in there. We had our family Christmas/Thanksgivings/birthdays there with him in the conference rooms. He was never left out of any family event. It was extremely hard to see mom and dad separated but it had to be done. It was the right thing.
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Grandma1954 - My husband is not a veteran so will not be able to access the benefits your husband could. Thank you for his service. Veterans deserve the best care possible.

Idahogirl - My husband has been in stage 5 for a long time and I had thought all along that when he got to the point that he was incontinent I would place him in a facility. Presently he has had a few accidents but for the most part can toilet himself. However he is now getting up in the middle of the night and roaming around the house or sometimes he just sits in the living room. He hasn’t done anything dangerous yet.

You are reassuring with your assessment that placing your dad was a positive decision. While careing for my mom, and now doing what needs to be done with her estate (I’m her executrix) I am not able to entertain my husband and provide the mental and physical stimulation he should be getting. I do my best under the circumstances and hopefully will soon be able to concentrate on just him. He does spend a lot of time in front of the TV. He loves to make jigsaw puzzles but in the past few months he will not make them without my being there making the puzzle with him. I set up my computer on the puzzle table to do my work there and sometimes that is enough for him to work on the puzzle.

I think the transition to a facility will not go easily with him, judging from how he reacted to the day program he once attended. But I think (wishful thinking) once he adjusts he will enjoy the socialization and activities that a facility has to offer. Before Alzheimer’s he was a very sociable person.
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Tea4me, someone should have told you that once a week day care is not enough for the person to acclimate. Also, call your local Alzheimers Association and local Area Agency on Aging to find out if there is any extra help you guys might be eligible to have.
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The fact is whether he's in a memory care facility or at his home, he's going to lose his abilities bit by bit. Putting him in a facility helps in reducing your stress in dealing with a loved one going through a debilitating disease, on a day to day basis. If he's young enough, I would look into neuronal stem cell treatments. There were some recent successful treatments reported. I'll post you the info soon.
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Here's the contact for neural stem cell treatment: Dr. Gary Steinberg, Stem cell researcher, head of neurosurgery department, Stanford Medical Center, Stanford University. He reported some success in stem cell treatments involving stroke patients. Seven of 18 patients recovered some sort of functionality. It may be applicable in your case. Try conversing with him and see how it goes. A word of caution: there are lot of hacks advertising miracle recovery using stem cell treatments. Use your judgement! Best of luck!
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