My 71 year old husband was diagnosed with Alzheimer’s Dementia 8 years and 6 months ago. For the first 3 years it wasn't terribly hard to take care of him. My 90 year old mother has Dementia but is actually doing quite well. Her Dementia is mild. She beat breast cancer a year ago and is remarkably healthy and able so she lives in an independent-living apartment at a retirement community. I visit her 3 times a week and take her shopping when she needs to go. I take her out to eat when she wants to and take her to Bible Study and church with me. When I moved her here she lived with us for the first 3 months and opened a joint bank account with me so we could take care of her finances together. I take her with us on vacations. I refill her medicine box every other week and take her to all her medical appointments and pick up all her medications at the pharmacy. She doesn't like the mail-in option. She is always very grateful for everything I do for her. My husband had been slowly getting worse after the 3rd year with Alzheimer’s and It was becoming increasingly difficult to take care of him. Then his mental and physical health declined rapidly while I was in the hospital for 6 days in October after spine surgery. I have come to the decision, with my children's agreement and support, that it is time for my husband to go into a long-term care facility. I just don't think I am capable of continuing the kind of care he now needs. His brother and sister-in-law, and a friend who lost her husband to Alzheimer's a couple of years ago, think I'm being selfish. They tell me all I need to do is ask the VA to allow more hours for his in-home health Aide. At present our HHA works with us 11 hours a week and is great with him. I could see if VA would approve more hours but that won't help me with seeing to his bathing needs, getting through the half hour I spend preparing him for the night and seeing him settled him down for sleep. More hours with an HHA wouldn't help when he wakes me up in the middle of the night knocking on his bedroom door because he doesn't know where he is or where I am. He thinks it is time to get up at 3:00 a.m. or 4:00 a.m. but doesn't know how to get out of his room. This is a new behavior that started about 2 weeks ago. The first night he did this it scared 10 years off my life because I was sound asleep and suddenly heard very loud knocking. I thought it was someone at the door even though it was 2:48 in the morning on my way to the front door I realized it was coming from his room. This has become a nightly habit. There are other things too that won't be changed by having more hours with a Home Health Aide. I am already struggling with guilt at the idea of putting him in a facility. Our children started telling me months ago that it is time. I told them I didn't think he was ready and didn't think I could do it. Now even my 15 year old granddaughter, who dearly lives her Papa, says it's time. I am confused and can't disagree with those who say it is selfish of me to "put him away" as they call it. I don't know what to say to them. I am glad I found this website. I have a feeling it is going to be a great help. I hope one of you can tell me what you say to people who tell you are not doing right by your loved one.
You can call the non emergency number or even 911 and ask for a "Lift Assist".
Paramedics are trained to help someone up without injury to themselves or the person they are helping.
In most cases ther is no cost if there is no transport to the hospital. You will have to sign a release.
The other advantage to calling is they now know there is a "vulnerable" person in the home and will be prepared when/if they have to return
People can be so cruel and selfish when they are afraid. That’s what this is. Your husband’s brother is thinking of himself and “what if”, and sending a clear message to his family—don’t ever put ME in one of those places.
You most certainly do not deserve this. Eight years is such a long time, and he is so young. You’ve had health issues already. Continuing to care for him at home will probably kill you first. How does that help?
If I were in your position, I’d have one “come to Jesus” talk with BIL: unless he wants to take full responsibility for his brother he has no decision making authority whatsoever and I will not tolerate his meddling. The first word he speaks to either husband or me on the subject will be the last ever. I’d be very willing to go no contact over this. If you have a son, you might ask him to join you for this talk, to demonstrate your solidarity on this.
Listen to your wonderful, loving kids, who have your best interest at heart and not themselves. I wish you the best. Please let us know how you’re doing.
I am keenly aware of our good fortune to be able to afford memory care. This diagnosis is like Tsunami destroying everything in its path, including family finances. Our doctor told me last week at hubbys appointment that I was wise in my choice, making the move before there is a crisis and there will be acrisis.
I know this is best but let me share that although it has solved many issues, life is still very difficult. Husband's weight has stabilized after losing a lot, I can now sleep through the night (turn off your ringer to avoid middle of night calls), I am starting to bounce back from a long covid infection, and I know he is safe. Still, it is not a panacea. Husband is having a tough time adjusting, which means I am, too. Even though I professed to my old friend I have nothing to feel guilty about, guilty feelings still arise in me. As I have shared here before ours was not a perfect marriage but it has been my role for 48 years to take care of this man. Old habits die hard! So, yes, be prepared for some guilty feelings and second guessing yourself. You are a parent so you know too well that sometimes we must make the tough decisions to take good care of those we love.
I wish you some peace and comfort in the coming days as as you discern what is best for EVERYONE.
In my humble opinion, home is where he is familiar, home is where the heart is so to speak so if he can afford to stay home with 24 hour care then I believe that is best. If that is not doable do your due diligence and find the best possible place to allow him to age with dignity and support. Also consider hiring a Care Manager to ensure he is being well taken care of and checking in on his well being 1 x a week.
Do they even visit? If so, tell them to continue to visit him in his new home so he won't feel "put away" as they call it. Tell them looking after your own health and well-being is not being selfish and say if they feel different, they have a right to their opinion but as others have suggested... you don't get a vote in their family decisions so they don't get a vote in your family decisions. If they don't currently visit then they don't even need to know where he lives. Any question about his well being, be honest... he is doing fine, he has some bad nights, etc... they don't need to know where he is doing fine or having bad nights.
1 - Sleep medication from his doctor to help him sleep through the night. He will need this whether he stays with you or goes into residential care.
2 - Check with the VA about more hours for evening help. You might be surprised that you can get more help... and that might be all you need. Consider whether a trial of respite is needed. Of course, it seems you have already considered these options and realize "the time" has come.
3- My snarky response to critics - sign them up to take turns being with him throughout the night. They do not realize that you need uninterrupted sleep in order to function. Also sign them up to help with the evening care he needs. When they realize that this is part of your continual challenge and they are not helping, then the protests should subside. Make sure to "ask" as sweetly and innocently as you can.
I was lucky caring for my husband.
He was easy, I was easily 15 years younger than I am now when he was diagnosed and I am sad to admit that I do not think I could do now what I did even 6 years ago.
But I based my decision to keep him home on 1 thing.
Safety
If it got to the point where is was no longer safe for HIM for me to care for him I would have had to place him.
If it was no longer safe for ME to care for him I would have had to place him.
I was lucky that I had Hospice the last 3 years of his life. I got all the supplies, equipment that I needed to care for him safely.
And I had caregivers for a good portion of that time. They were not there every day but there were there Mon-Fri from 9am until 4pm. That gave me a lot of time to get things done and get a break.
What you say to people that say you are "putting him away" how about...
"Well "Gertie", since you are so sure that it is easy how about you come over on Mondays and take care of "Hank" while I get some things done"
"And "Helen", you can come on Tuesday"
I can bet that all of a sudden you will stop getting calls from "Gertie and Helen"
This was so good for Dad and we knew he was being cared for. If anyone in your family has an issue with this, ask them to let you know what hours they will be coming every day to help. Ultimately, it's your decision and health, not theirs.
Hugs 🤗
I live 1,000 miles away from her and caring from her remotely is no longer working and she isn't willing to move to me, so I'm moving her near our family in her state. I checked on in home care for overnights and it was going to run her close to $17k a month which is not feasible! This has to be one of the hardest decisions I've ever had to make but I know it's best for her and for my mental wellbeing as I have been caring for both parents since 2019. My dad passed in November and her mental status has taken a huge nosedive. Do I want to put her into a care facility, absolutely not, but I need to work and still have a good 20+ years before I can retire and care for my own family too. Please do not feel bad for coming to this decision. You know what is best for you and your LO.
The stuffy in-laws can shove their opinions.
I bet you $50 they will make an excuse not to take care of him for just a week.
Then you tell them, "I will only listen to actual caregiver's input. You know nothing about it, so your input won't be considered."
Don't take the crap. You are his wife, your kids are in agreement. Done deal.
As you can see with your mother, dementias are not all the same.
These folks who think you're so "selfish" for "putting him away" haven't been doing the hands on caregiving for 8 yrs and 6 months. They are Armchair Critics who do nothing but Point Fingers at what you're doing wrong from the comfort of their armchairs. They are to be ignored and their opinions are to be considered nonsensical. When THEY come over to relieve YOU of night duty, THEN they can have a relevant opinion.
There are TWO lives that matter here, not just your husband's because he has Alzheimer's. What about the stats that show the great number of caregivers to demented elders that die before the patient? Then what happens? Then the patient goes into managed care where he should've been for years anyway! And the caregiver is dead!
Placement in Memory Care Assisted Living or Skilled Nursing is not the horror show many make it out to be. I had mom in Memory Care Assisted Living for the last 3 years of her life where she got MUCH better care, socialization and activities than she'd ever have gotten in my home. I was not equipped to care for her myriad issues at all. Plus, I know my own limitations and hands on caregiving is one of them. Mom lived to 95. I visited her regularly and was her advocate for over 10 years. Anyone who had anything negative to say to me was ignored 100%. Until a person walks a mile in your shoes, they have no right to judge.
Best of luck to you.
facility. That is a great reason to give the buttinskies of I must give them one. Knowing that makes me feel much better sbout my decision. Thank you again.
I feel the same way toward people who say it's shameful not to have children, or it's awful to expect my husband to cook his own dinner if I'm late at work. People just have different opinions about how they think things ought to be. Usually because of something their grandparents had to do back in olden times.
Just smile and change the topic. 😊
I believe You have made a very wise choice and know that you have limitations when it comes to alzheimers.
How dare those people be so judgmental. They do not have any say at all. Ask them to keep their personal judgment and any comments to themselves. No longer discuss with them any plans for you and your husband.
So sorry you are not supported by all family. Lean on the fact that your children are supporting this difficult decision. I wish you strength and peace during this challenging journey.
End of discussion.
Save yourself and your sanity.
I am glad that your children support your decision.