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

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.

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 -

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!

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.

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.

Do you have someone who can help you with a I Phone and debit card ? I use a app called LYFT and order a car when it arrives I tell my Dad “ The car is here get In “ and Bring him to the Doctors and we go to lunch afterwards . As far as dentist I can see there would be fear - brush teeth and Rinse with Hydrogen peroxide and sea salt in warm water . I use LYFT a lot and don’t give him the option of saying “ No “ Also a certified nurse assistant comes in twice a week for bathing and light housekeeping and most of that is covered by Medicare .

You need to get power of attorney, sir. That way, you can have in-house help without your wife's agreement. You can also tell her that it's more for you than for her. Maybe that will sway her. Good luck!

Why not cut the dental visits to once a year?

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.

It seems she has fears. First glaucoma makes going outside her home very difficult to discern what is there. She is familiar of her house and can get around , so feels more normal. Also the dear that perhaps you will not actually take her to where you say- the fear of being dropped off at a nursing home. My mother had that fear even when we were as loving and supportive of her. It is irrational yes, but she knows she is vulnerable and needing your constant care. So there is fear you would abandon her and yes that is irrational but it is her mind at this stage.
And with her condition she is confused easily so leaving home , things seem so unfamiliar which is scary.
Talk to her dr about this. Is there calming meds? Talk to a counselor, are there ways to speak with her or prepare her for a trip outside?

We have a very similar problem with my mom. The problem with her is that she works herself into a frenzy and spirals out before simply refusing and or being in no shape to get out of the house. We have found that not telling her about appointments until the morning of or a couple hours prior depending on what she needs to do, works much better for everyone. She doesn’t have time to work herself up and then into refusal. I do think that this disease makes the world more and more frightening for its sufferers. It becomes harder and harder to process the information their senses are taking in, they can’t trust their vision and or the information their brains creates out of what their eyes and ears take in. Routine while they may fight it (my mother has always fought with routine) makes things less frightening and being in their domaine helps them feel in control. We as the people that love them watch their worlds get smaller and smaller, sometimes a recreation of another time in their brains though I find that a small comfort as long as her brain is in a happy time do her life so while I can’t know exactly what it is to be in my mothers body I can imagine how frightening and frustrating it must be. I constantly find myself thinking I’m slowing things down and working at her pace only to find I am still moving and speaking too fast for her, which is why we give her at least a couple of hours to get ready for anything. Sometimes not telling her what she’s getting ready for until she’s done…

I don’t know how or when you tell your wife she has an appointment but these doctor appointments are important so perhaps a change in the timing and presentation of the notice will help. Also maybe do the same thing and rather than taking her to an appointment take her out to pick up lunch that you can then eat in the car in some quiet maybe favorite spot surrounded by nature or go for a drive and that’s all so she is safe while having an “outing” then when and if she starts enjoying these outings again do it after a trip to the doctors so there is some time to relax away from home first. My brother often takes my mom out for breakfast now (she will go into her favorite diner to eat pancakes) or they pick up sandwiches and park on her favorite street (it’s surrounded by woods and she used to rescue turtles crossing the street there) to eat them in the car. For my mom the biggest factor is anxiety, she gets so anxious over everything, especially when she can’t really process it or is afraid she won’t be able to and of course the more anxious she gets the less she is able to process so whatever we can do to lessen her anxiety we do. It’s an ongoing and ever changing process just like her go to food is and keeps us on out toes! At least it’s never boring this venture of dementia. Good luck, I really can commiserate.

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))))

You are a saint and a blessing and a wonderful husband.
You are also a person who deserves some semblance of living without also being a 24/7 caregiver.
Here are some thoughts:
1. Have your wife assessed by hospice for potential admit to hospice care services; hospice is about living with quality of life in midst of a life limiting illness , not about dying. If hospice care services are supporting your wife ( and YOU) in your home, they can assist you with in home services that remove the need to go to doctor appointments etc. They also provide 5 day respite care for the pt. cared for in a facility different intervals to assist the PCG ( primary caregiver/ YOU) to have a much needed break.
They can also assist you with potential decisions about placement of your wife in a memory care ( or other) appropriate facility.
As her PCG and POA you may want to also consider what would happen to your wife 's care needs if you should become ill or otherwise unable to continue 24/7 care ?
Safety and long term as well as short term needs/ decisions for her well being as well as yours may be conversations you want to have now while you are competent and capable to make the decisions for yourself and your wife.
Her refusal to leave the home and other behavior changes will only increase in challenges.
Do not feel guilty about these conversations or decisions. Do not try to reason with her ( or anyone) who has been diagnosed with dementia; they are not capable and you will only end up frustrated, anxiety provoked and further discouraged. If you have adult children or other family who may need to be included in conversation please do so but also do not let them nor anyone make the decision s for you. As for dental care, speak with her PCP ( primary care physician) for recommendations. Remember that special consideration needs to take place with not only transport of a dementia pt. to appointments but also what dentists can best serve safely a dementia pt.
Please seek consult with PCP, speak with local hospice of your choice or PCP referral for information and, if you practice a faith, be sure to have the pastoral support for yourself on a regular basis.
Blessings and peace

You are marvelous! Dementia not withstanding, your wife is one lucky duck to have you in her corner.
I know you said you are not ready for MC but please do your research on nearby facilities now. You have to take care of yourself because you are your wife's rock.

You have to pick your battles with care - I don't this tooth brushing would be one I would fight in the scheme of the larger picture but check this out with the new found house call practitioner.

One of the doctor's I worked with said one of his dementia patients, in one of the last somewhat coherent conversations they were able to have, described feeling like he was on a high speed railway train --- he could see the blurred countryside and he couldn't understand the language being spoken by anyone on the train. Scares the heck out of me without having dementia but it gave me insight into what a patient might feel.
Wishing the best for you and yours!

You could call hospice or palliative care for a consult in the home. If they believe she's ready, help would come to the home. They'd supply the things you need. You'd still need caregiver help, but hospice would provide some support for you. I believe she is ready for memory care in a facility, and you might think so too if you checked them out.

One step at a time might take you to where she needs to be. Her mental health is the key to success. Getting a psychiatrist will open the opportunity to get her evaluated for medications that can help her get balanced: agoraphobia can be treated as can her other medical issues. Perhaps she can get admitted to a psychiatric hospital for a short stay to get medical and psychological evaluations. The hospital can get her the help she needs, a social worker and relieve you of being on duty 24/7.

(copy and paste into search window)
https://doctorondemand.com/what-we-treat/mental-health/

Ask for a psychiatrist (Geriatric specialist if possible) and ask about the nearest psychiatric hospital.

Google TEEPA SNOW - she is one of the leading experts in dementia - and how to communicate, relate, get needs met. Extremely educational.

* If you are the POA, you can possibly do more (not sure). Could you tell your wife you're going for a ride or somewhere she'd like to go and then take her to the MD? If she has dementia, she will likely forget afterwards.

* Some of her behavior could be depression; she may need medication or medication changed.

* Glaucoma and the DDS ? Do you mean optometrist? or both eyes and teeth?

* Try googling locally for MD house calls. Are you able / willing to either change your insurance or pay out of pocket for house call?

Ask for evaluation by a Geriatric Psychiatrist who is authorized to write prescriptions.

Is it possible that you get her a Dr appt and then ask her to accompany you on your “errand”. Would she go with you to “help you?”

I agree with what someone else here said…do this at last minute, so she can’t dwell on it.

Does she give any reason why she won’t leave the house? What does she think will happen?

Yes to what another said…dementia patients seems to mirror what they feel/see in others. If you tell her you need help, maybe shell go with you. You can inform the Dr about this in advance, so it can “seem”, like you are the focus of the Dr rather than her.

If you can’t coax her to help you at the Drs, then I’d speak with Dr and also a social worker to see how to proceed.

This dementia is so darn tricky! You are at your wits end and then have to smile, be extra patient and play games to get cooperation. But you do have to do these things. Anger and frustration only beget the same.

When she has phone or online Dr visits, does the Dr tell her she needs to come into the office? Could the Dr convince her to come in?

You will be able to get her to a Dr or a Dr to her. Please post here when you do so that others will see what worked for you.

Wish I had a good plan for you. Please keep us posted. Good luck!

You can get home health care. A nurse that visits and another to give her a bath. Right now mine is covered by Medicaid. Don’t know how long it will last but there are other programs as well. I still need to take her to the doctor but the nurses are great and do many things.

Fred3202, So happy you have found a solution. My wife is the same way. Now, she WILL go to the dermatologist, eye doctor, and to the dentist. If your new solution ends up not doable, don't hesitate to go on Hospice In-Home Care. The nurse visits 1 to 2 times (you determine how often) a week to evaluate, treat if necessary, and provide necessary medications related to her disease. It's all paid by Medicare. There has been no out-of-pocket expenses for us. For meds not related to the disease, they will order them for you and you pay as before. Even at nights, holidays, or weekends, when my wife has had an issue, the on-call nurse has been in touch immediately on the phone and usually at the house within 30 minutes. We have nothing but great experience with our Hospice. In addition, at no cost, they will assign, if needed (as determined by YOU) a social worker and a home-aide to assist with bathing and dressing. Best to you!

Fred3202: Perhaps she should be seen by her primary care physician for her agoraphobia.

The dentist for glaucoma? How does that work?

There are a few doctors that do make house calls. You would have to check in your community. They usually charge a bit more for their services. Insurance can be another issue too.

Telehealth is a great alternative for some things. I am glad that you were able to utilize those services.

Eye doctors and dentists are a different story. I don’t see how it would ever be practical for them to make house calls.

Unless she is complaining about her teeth. I don’t think that I would push the issue. Same with the eye doctor. My mom was relieved to be on hospice after going to numerous doctor appointments.

Going to the dentist takes a lot of time and energy for an older individual. My mom was completely exhausted when she went for a cleaning and routine visit. After awhile dental visits became too much for her to handle. Do you think your wife is up to sitting in a dental office that long?

Best wishes to you and your wife.