I've been the sole caregiver for my 87-year-old wife for a little over one year. Any advice?

I also was taking care of my wife with dementia and a host of other ailments at home until about 10 months ago. She got very sick and I ended up taking her to the ER in the middle of the night. I didn’t know what was wrong with her. It turned out she had an UTI and sepsis, and nearly died. It was at that point that I concluded I could no longer take care of her at home, even with a lot of outside help. I was afraid she might get sick again with something I wouldn’t recognize and it might end badly. So I reluctantly placed her in an Al facility. These facilities are not perfect, but I think she is getting better care there than I could do at home. But a side benefit is that after I placed her in the facility I realized how stressed out I had been. I had been losing weight, not getting enough sleep, and generally pretty run down. I still go visit her twice a day on most days, but I am getting enough sleep and I now have time to take care of myself. Every situation is different, but I would suggest you consider this route.

I have had pretty much the same questions you are asking. My husband has had dementia for seven years, which has become worse over the past two years. He does not know our children or grandchildren. I'm not sure he knows me, I'm just here all the time. I just found out that our preferred medical system does make house calls and I have enrolled in that program. It is very difficult to take him to an appointment so I am grateful this problem can be solved. I have found much information on this site that has helped me a great deal. His moods will mirror my moods. If I am angry, he "digs his heels" in and won't do anything that I ask. If I am patient and calm (even though my head is exploding) he will cooperate. I have a woman from an agency come five days a week for four hours each time. It gives me a little free time so I can go shopping or just have four hours of uninterrupted time to catch up on phone calls or other chores around the house. Wherever his mind has gone, he seems to be happy most of the time. There are still good days, but they are different. My sweetheart is gone. Dementia is a devasting disease. I pray for patience and kindness every day. Take care of yourself and get some help if you can. ((((Hugs to you))))

I'm glad you found us here and can vent and get advice on your difficult situation.

I think you need to do what I did with meds for my mom with dementia. Since you can't trust her to do it or even to know if she took her eyedrops, etc., it is time for you to take full control of it. Be like a nurse in the hospital. Bring her her eye drops and tell her it's time for her to put them in. That's the only way you will know that it is done.

Most people don't want helpers at home. Well, too bad. I NEEDED help and drew a line in the sand that I was NOT adding more tasks to my day as her needs increased. I said nope, I'm not cleaning her room and changing her sheets when she could no longer do it. So I hired (with her money) a cleaning lady to take care of these things (and more). That could be your first helper - a cleaning crew to take care of the house.

Then get an aide in there to help YOU make breakfast, get your wife in the shower, dressed for the day, clean up a little, play a game with both of you and then you can start right away with extricating yourself once they are engaged with something. Say you need to run to the store or do an errand or whatever. Even if it's not 100% true, leave for half an hour. Then extend it, etc. Your wife will adjust. My mom did NOT want helpers here but she quickly depended on them and realllly liked them. We were very lucky to have some awesome ladies helping her out!

Best of luck. Keep posting and asking questions and getting the support you need!

Fred,

Bless your heart for caring for your beloved and being so tender and concerned to not upset her. You may need to begin to rock the boat a bit in order to save yourself from caregiver burnout that can literally take your life.

The teeth cleaning is a battle not worth fighting, let it go and simply keep her teeth and oral health up as best you can, a waterpick setup helps.

What you truly need is for someone to come in and sit with your beloved for a few hours so that you can get outside and do things for yourself. I'd start introducing a person or two now because as her dementia progresses, she'll become more resistant to any changes and the battle will be a war. You cannot bow to the rigidity of her broken brain, you have to be the one making these decisions and if some things upset her, understand that even if she sulks, it will pass. You're caring for her out of love and when that love is at the heart of decisions, you're always right to facilitate her acceptance.

The Glaucoma is another one to weigh. Although she's always taken her drops and says she is now, I doubt it. Many use 'nanny cams' to see what is really going on and it would be useful to place one in front of the vanity mirror where she doers her eye drops. My Mom (now 88 in a MC unit) began flat out refusing them and when I talked with her about it, one time she was completely honest with me. When I once again explained that she needs then to be able to see clearly, she stated: "I don't want to see clearly." That was reasoning that I had no argument with because with all of her losses, the need to withdraw is completely understandable.

Dementia brings a whole new standard of 'normal' to everyday life and you need to remain as active and engaged as possible and you'll not be able to bring your wife along with you, hers is a different path now.

Perhaps it's time to consider moving from your home to an AL facility with options for advancing care so that you can still do meal prep if you wish or dine with others, whatever you choose. An AL would allow you to engage socially while she would be safe and you'd have back up for the times when you need to have your own time.

These are the tough times. I watched my parents go through these early changes and then we lost my Dad to Covid and everything changed. Please start to make arrangements so that if something happens to you, your beloved won't be left to others' decisions, however lovingly made. You're very much at the helm now and have the time to carefully consider and choose between options for change.

Best -

My friend's brother went through something similar with his wife with Alzheimers, but in her case it was due to paranoia and irrationality from her disease. The answer for him was to hire a qualified in-home aid/companion for her. The aid eventually became a "comfortable, trusted" person and the wife became far more cooperative and took her hype-focus off her husband (he was getting depressed and starting to drink). The aid was able to get her out and doing things she hadn't done in a long time. The husband got some of his life back.

In your case, you need to accept that you can only do what is do-able. In reality, will she be able to accurately answer questions about her her vision to the eye doctor? Or dentist? Will she stay in the chair and cooperate? As time goes on, the answers will be no, due to her dementia. Bless you for taking such good care of her and wanting the best on her behalf. Everything about dementia is hard.

Fred, you're going to have to pick and choose your battles and I don't think taking your wife to a dentist or even the eye doctor is one worth fighting.
Your wife has dementia, and there is no happy or good outcome with it.
My late husband who had vascular dementia didn't like to go places either, and eventually it just got too hard for me to take him out, so I stopped trying. It wasn't worth the time or the trouble.
You're doing a great job caring for your wife. Just remember though that you now have to live in her world as she can no longer live in yours. And in her world none of the things you think are "important" are important to her.
God bless you as you continue on this journey with your wife.

Fred3202, besides the dementia, I was wondering if the glaucoma [hazy or blurred vision] is causing your wife to feel unsafe when she leaves the house. The fear of falling, bumping into something, etc. Movements she can no longer identify can frighten her.

Check with your wife's primary doctor to see if there is something he would recommend to help her be calm enough so she can visit with her doctors. At least be able to visit in person her primary doctor, and later possibly see her Ophthalmologist to get treatment for her glaucoma.

Has covid frightened her, as it appears the dementia caregiving started just a year ago, and covid is going into its 3rd year. Just a thought.

There are mobile dentists who will come to the house to work on patients while they sit in their easy chairs. I would not advise such a thing, however, UNLESS your wife has a toothache or is in terrible pain & requires an extraction. Why? Because it's traumatic for an elder to have work done on their teeth, even w/o dementia being in the picture. Add dementia in, and you've got an even BIGGER issue to deal with; expecting her to sit still, follow instructions, etc. When my mother had advanced dementia & lived in Memory Care AL, I'd hire a mobile dentist to visit her in her suite ONLY if there was a dire situation going on; then her PCP would prescribe an Ativan prior to calm her down, then the dentist would numb her up with Novocaine, and extract her tooth from the comfort of her recliner. It was horribly expensive, too, but there were no other alternatives since mom was wheelchair bound & I was unable to drive her around and get her in and out of my car. It cost her over $1000 to have a tooth extracted in 2020. So.........if your wife needs a cleaning or something like that, I'd nix it entirely.

Like the others have said, you'll need to pick your battles with your wife when dementia is running the show. I'd also suggest you hire someone to come in to give YOU respite, b/c burnout and compassion fatigue are real (look up compassion fatigue on Google). You can't expect to do caregiving 24/7 and never give yourself a break, or you can wind up dying before your wife does (God forbid). Don't become a statistic. Hire help instead, and use common sense since your wife is unable to nowadays.


What I'm wondering is if your wife's agoraphobia (Fear of leaving the house) isn't a sign of agitation and/or extreme anxiety brought on by her dementia? I think it warrants a call to her doctor to ask about prescribing a mild calming medication to see if it helps her.

My father had very serious glaucoma which required ONLY the use of eyedrops (a few different ones) that kept his eyeball pressure controlled. You may have to use a fib to get your wife to the eye doctor by telling her Medicare requires a trip to the doctor once a year in order to keep the insurance intact, or something like that. Promise her ice cream afterward, but call her doctor FIRST for calming meds, that's my suggestion.

I suggest you read this 33 page booklet (a free download) which has THE best information ever about managing dementia and what to expect with an elder who's been diagnosed with it.

Understanding the Dementia Experience, by Jennifer Ghent-Fuller 
https://www.smashwords.com/books/view/210580

Jennifer is a nurse who worked for many years as an educator and counsellor for people with dementia and their families, as well as others in caring roles. She addresses the emotional and grief issues in the contexts in which they arise for families living with dementia. The reviews for her books are phenomenal b/c they are written in plain English & very easy to read/understand. Her writings have been VERY helpful for me.

There is a full list of Do's and Don'ts in that booklet that you may find helpful when dealing with your wife on a daily basis.

The full copy of her book is available here:
https://www.amazon.com/Thoughtful-Dementia-Care-Understanding-Experience/dp/B09WN439CC/ref=sr_1_2?crid=2E7WWE9X5UFXR&keywords=jennifer+ghent+fuller+books&qid=1657468364&sprefix=jennifer+ghent%2Caps%2C631&sr=8-2

Wishing you the very best of luck with all you have on your plate.

My father was the primary caregiver for my step mom who has Alzheimer’s. My dad never changed a diaper during our childhood. Being a full time caregiver was hard for him as he had type 2 diabetes and was very overweight.

My dad hated having strangers in his home, but he eventually agreed to have someone come in to help bathe her and other things.

My dad died at 79. You are older. You are going to need help. My step mom is in a memory care facility now. She is happy there. I am not sure the she understands her husband is dead.

Maybe find a memory care facility near your home so you can visit often. Or find a facility where you can go together, all your meals are prepared and they’re doctors that come to the facility.

The first thing that I want to say to you is how very sweet you are.

Your wife is very lucky to have a husband that is so kind and willing to help. It’s obvious to me how deeply you love her.

I don’t know how you have the stamina to be a caregiver at your age. You must be exhausted when the day is over. Are you able to get some rest at night?

You sound more ‘with it’ than many younger people.

Have you contacted Council on Aging in your area? Explain your situation to them. They should be familiar with various services that are available in your community. They can also come to your home and do a needs assessment for your wife and she may qualify for receiving help, then you can take a well deserved break.