Caregiver for Spouse with Alzheimers - How can I Survive?

Life can be very cruel sometimes. The fate of Alzheimer's is cruel, but I think the fate of patients' caregivers is even more so.

I truly wish I could offer more than just sympathy. I live in dread fear that I will slowly lose my mind and not realize that I am slowly exhausting and killing my wife, whom I love more than anything on earth.

If you have belief in a higher power, perhaps that can help you. During the darkest times of my stroke recovery, when I was in so much pain I couldn't stand it, I would recite "Not my will but thine be done" --- a lot.
It helped me to endure circumstances that I could not begin to comprehend.

I haven’t had your experience, but from reading your post I do have a gut reaction. I also remember that my father had dementia, and neither he nor my mom wanted to move out of their home. She was his primary caregiver, but got a lady to come in and help part time. Also there was a visiting nurse checking on him. His dr ordered certain services that I think were covered by insurance.
I don’t know your financial circumstances or whether you drive, etc but if at all possible, get out of that facility as it sounds like an additional stressor rather than a help to you. Look for a smaller house or apartment (not a condominium; I lived in one and it sounds a lot like your description). Get someone to come in and help with your husband. I’m not sure, but I think Medicare may cover certain services. Also, is there an Alzheimer’s organization that could refer you to resources?
I know you love your husband and want the best for him, but it’s essential that you care for yourself as well.

I appreciate your response and I’ll take all the sympathy you can offer! Lord knows, I’ve had many pity parties myself.
Also, thanks for reminding me to pray the Lord’s will be done. I often forget that everything happening in life is preordained, but none of it takes place to hurt us.
I also commend you for your acceptance of His will, even in pain.
Stay strong and I’ll (try) to do the same!

Thank you for responding.
Trust me, I never wanted to give up my home, but felt I had no choice, since my son offered to help. Believe you me, he and my DIL have been tremendous help to me. However, you are correct in your observation that this facility is a stressor as well. I wish more than anything I had my own home, but since I’m not driving anymore AND due to a horrible fall back in January, I’m now in a wheelchair. Hopefully, this won’t be forever, but at my age, a broken femur/hip won’t heal as quickly as that of a young person.
Without going into a lot of tiring detail, i have a history of several spine surgeries (due to undiagnosed and untreated) scoliosis. None of these surgeries happened until I was already 58 years old! It was truly a blessing I was in great shape, or my recuperation would’ve been a lot more difficult.
Anyway, I tell you all this to paint you a picture of my life. I don’t mean to make you feel sorry for me - just to let you know all the obstacles I’m facing.
At this facility, they do have a nurse on staff who can help me when I need it. Right now, my husband will swear on a large stack of Bibles, that he has a “small memory problem” and refuses to accept what doctors tell hm. Did I mention how stubborn he is?? Honestly, it’s tragic, but also maddening!
Again, thanks for listening and for your advice. I guess I really needed to vent…

Wow; you really have a lot of factors there! It would be difficult to have your own place right now. Glad to hear your son and dil are a help to you.
The facility doesn’t sound great, but at least there is medical help nearby if you need it.
Venting is a good thing; holding stuff in is unhealthy. I’m glad to listen.
Scottrl is right also about prayer, I think.
Please let us know how you are getting along.

I totally agree prayer is extremely important, and believe you me, I’ve been praying up a storm. So far, it appears my prayers have gone unanswered; however, I’m not about to stop.

Yes, I DO have a lot going on in my life. Not sure how my sad story will end, but I know I shouldn’t expect answers in accordance with MY timetable.

I do know having my own place might never happen again. It truly makes me sad. I just live each day as it comes, and pray things just might get better; however, I also realize things will NEVER be better for my husband, unless the Lord wills it.

Thanks very much for responding.

I have a loved one with dementia and it has affected me ways that are forms of torture. The good news is they they have made a number of totally unexpected major reversals the last few years. I believe this has to do to the right medication AND a small facility that provides constant love and therapeutic stimulation all their waking hours by competent and angelic caregivers. This is not a place where you stay in your room or bed all day! Either you're moving in some fashion or your sitting on the porch with others. Still, it's an extraordinarily difficult for me. What I have done to make it better for me is:

1. Walk a continuous hour a day at a brisk pace in the early part of the day. That sets me up for a day that I can manage, usually.

2. I looked up a friend from my old neighborhood who I haven't spoken to in decades and we now talk on the phone for hours from time to time. That has been enjoyable for both of us. It puts my mind in a different place and I get very different perspectives on all kinds of subjects we discuss, from politics, to travel, to reminiscing about where we grew up, with whom and the (dumb) things we did.

3. Go on this forum to share good, helpful information with others. It is also therapeutic just to post and read and reply to the comments. I recently had a "neighbors from hell" situation and this forum (the mental health forum) gave me some very good advice but more importantly comfort when I was literally going through a living nightmare. Thankfully those neighbors are long gone now.

Though you are living with your husband in the senior community facility, it still impacts you to be with his behavior around the clock. Are there ways you can be elsewhere during the day or evening hours?

I don’t know if funds are an issue, but you might get a legal opinion from an attorney about your rights and responsibilities. Can you switch to a place that suits your needs more?

Some places offer memory care on one part of the campus with a more independent living environment on the other. If you are in the US, most military are entitled to substantial help with long term care. An expert in planning of that type might be helpful for you.

I suggest the attorney because your husband may not be able or willing to understand why your level of care is different from his. Having around the clock support from someone like a nurse sounds helpful though if you have had substantial health issues.

Best wishes in finding a place that better suits your taste.

We're not bored. It seems like you are not well matched with this expensive facility. I don't know how locked in you are, and with all of the turmoil of this year, another change now might not be the best for you. But you should at the least be able to get away.
It can be tough because you love the guy and you know more than anyone in the world about what he needs and what comfort him. But taking a class or seeing a movie, a long walk you need to be able to step away. And luckily your son wanted you close to help you facilitate the things that you and your husband need.
If you can, slowly start looking for a place with fewer restrictions. Wanting a place where you can cook is such a small desire. Don't ask yourself to stop living.

I just retired from being a geriatric care manager and unfortunately your situation is way more common than most people realize. My advice is to do what you can to truly take care of yourself and to reach out for support.

You mentioned a dil…could you go and cook at their house once a week to try some of the recipes you see?

Medicare will cover for you to see a therapist who specializes in working with older folks. I would also suggest you look into that option to give you support.

It sounds like your faith may be important to you. Have you found a church that you could attend and perhaps meet some new people who share your beliefs?

The Alzheimer’s association has a great deal of information on their website that could be helpful. They also offer online classes and can give you information on local support groups. There may be something at your facility but if not the facility should be able to provide you transportation.

If the facility doesn’t have transportation then there are usually local services that provide transportation for seniors who are wheelchair bound. The local senior center should have a good list of resources.

Finally, is there anyone at the new facility who you might be able to connect with? My suspicion is that there are others who are not only going through what you are experiencing but who also are not interested in the activities that are offered. You may be able to speak with the activity director who could facilitate something you might find interesting. For example, I can never see myself playing bingo but I would enjoy a small book club or perhaps you could lead a cooking class? The facility could provide the appropriate supervision if needed.

I guess my message to you is to do whatever it takes to take care of yourself. That is the only way you can be your best support for you husband as well. One cant give from an empty basket!