How do you keep sane?
My husband just had his second stroke; 2021 (1st mild), In 2023 he proclaimed he was cured and no more meds for him (refused to take them). Feb 2026 4 strokes 3 left, 1 right. His cognition is terrible, cannot trouble shoot, cannot retain anything for more than 3 minutes. I am trying to coordinate, PT/OT/ST plus pay his debts, set up disability, and did not notice his decline. I am so, so, so overwhelmed in trying to figure out what I have to deal with. I have PoA medical and financial but I do not feel right acting on it. I am trying to give him a sense of ownership, of self. But I am falling to pieces. I am overwhelmed. As I asked, how do you keep sane? How do I find time for "ME!!!!" While trying to figure all this out it is 10-12hrs days, trying to figure out access to something. It is draining, frustrating, and I cannot lose my temper. arghhhhh I am losing my mind.
Caregiving happens on the caregiver's term or else you will burn out (as you are finding out). Time to make yourself the priority and do self-care so that you can endure the marathon. You MAKE time for yourself. You expect it, demand it. You eat the elephant one bite at a time and every single day make sure you do something for yourself. Without exception. Tell your friends to hold you accountable to give yourself quality time every day.
I'm so sorry for this turn of events. May you receive wisdom and peace in your heart as you protect your own health as you help your husband.
See if the new Medicare GUIDE* program is available in your area. It's designed to provide comprehensive support to dementia families. Education, care, resources, and RESPITE. The program includes a dedicated care manager to work with you.
Take care of yourself.
*Guiding an Improved Dementia Experience (GUIDE)
https://www.cms.gov/priorities/innovation/files/guide-model-patient-caregiver-fs.pdf
Don't feel wrong about using the POA. This is exactly the kind of situation it's for.
I know you feel that you can look after him properly, but when not if....when you hit rock bottom, who is going to look after you? You said you have CDiff, that's a symptom of stress and anxiety, if you don't do something now to alleviate the stress it'll get worse. Either hire some help or place him in memory care.
I, too, had to let my husband feel like he was in charge because "no woman" was going to tell him what to do (accept the lady doctors he liked). Sometimes, he was in charge and the results were not good, other times I fibbed just to keep him happy.
If you can't find a way to have someone in so you can get some time to yourself, then moving to AL as suggested by earlier responses is a very good thing for you to consider. Just make him think that somehow it is his idea.
You obviously need help to preserve what's left of your sanity.
I have not used one, and didn't know they existed, but apparently you can hire a geriatric care manager to help manage some of the overwhelming decisions and tasks in your daily routine. They can coordinate the PT/OT/ST, if those are really needed, and are helping your husband. If the therapy is not making any meaningful difference in your husband's progress, eliminate it.
I think the biggest challenge for me in the beginning was navigating what services are available and how to access them. That's maybe where a care manager can be helpful. To give you guidance and direction.
You can hire someone to come in and help with taking care of your husband, so you can take some "me time". Even if you are all alone, just step outside for a bit. I used to go out on the back patio. I couldn't leave my husband alone, but I could hear if he yelled for help. Just soaking up the sun and the fresh air and the sounds of nature for 15 to 20 minutes helped. Sometimes my neighbor was outside, and we would chat for a bit. It helps to empty your mind of all the tasks you feel you need to take care of, by just leaving for a few minutes, maybe several times a day.
You don't have to figure out all of it now. Prioritize what needs to be done now, and the rest can wait - it will still be there later. For instance, get the disability application submitted first! That will take months to be processed, and there is a waiting period of months. (I forget how long - 6 months maybe?) Pay down the debts slowly. They aren't going anywhere.
Act on the POA. He no longer gets to take ownership of important decisions.
Put him into a full time day care program. If he refuses, put him into assisted living. Don't worry about him getting angry at you. He is beyond being able to understand. The priorities for him are safety and health care. Let him fight with someone else who is not emotionally involved. That gives you the security of knowing he is safe and the time to deal with the rest of his and your lives.
Get help to make a care plan for both of you. What happens to him if you suddenly are incapacitated? Who takes care of you? Meet with a financial planner who is reputable and get help making important decisions. Start taking control of everything.
This is your husband. We all understand that, and many of us have faced this situation or some version of it. You two may love each other, but he is unable to be your partner any more. If being around him is too stressful let yourself do things that allow you to take a break from the world (creative hobbies, day trips, reading quietly, what ever works for you). You are more important than he is now, because you are responsible to care for both of you.
Now BREATHE!
Seriously, my daughter who helps me care for my 78 yo hubby, asks me the same thing. We have moved into her home, and she and her husband are taking care of us. Some days she says she doesn't know how I keep my sanity, and sometimes, she's worried that I am losing it dealing with him. He is NOT a good patient.
Second: Your husband brought this situation (partly) upon himself. How could you not notice his decline? But now you do, so understand that he is never going to get better, and as for his sense of self, don't worry about it. He didn't have enough sense of self to take his meds and he now has altered cognition. He probably has no idea what you're dealing with. He isn't his previous self, so you'll have to keep doing what you're doing and become his self for him. Whatever that is.
There isn't time for you. What no one tells you (except me) is that this is what happens when you become a caregiver. It sucks. Unless you can hire a geriatric manager, you are stuck. People who tell you to take care of yourself have no idea how you can do that. It's just something everyone says. Ignore. Keep on keeping on. It's going to be 10 - 12 hours a day for a while. Take breaks, walk around your home, allow yourself a treat while you prop your feet up every afternoon. Arrange your day so that you don't work after 9 p.m. because that's when energy flags and we start making mistakes.
The best plan for husband may be that he goes to memory care or LTC. Then you are free to work those 10 - 12 hours on the details of his care without having to take care of him. Please think about it!
I am in year 3.5 of doing what you are doing. You're not alone, and I empathize.
The quick answer (from my experience):
It isn't easy and takes a lot of inner work and awareness, and making hard decisions.
I would suggest you hire an independent (medical) social worker to assist you as she can. I certainly 'could' as I work with elders / families and function somewhat as a social worker might / does. You could try to find a person who is a caregiver with elevated skills to help in these matters. I would call care facilities and ask if they have a list of care providers who might be able to work with you.
It sounds like it might be time to consider placement in an Assisted Living facility. When a person says they are cured and dont need ... - that is a major red flag that you NEED TO MAKE CHANGES / get help.
It takes tremendous effort to maintain yourself / core being when caring for another. I can do that fairly easily having practiced for decades ... although when you have this level of responsibility to another, it is challenging. Certainly was for me when I 'helped' my friend of 18 years as he progressed with care needs. I worked with him at this level for the last six years of his life. The last two he was in a nursing home. I took on the responsibility of being his (VA) fiduciary. It was a lot for me although I wasn't going to let him be a ward of the state.
I was also working with elders (my work) at the time although thank God that was limited.
You need to do what you need for yourself:
Get enough sleep
Eat as healthy as you can
Exercise - get the energy out
Meditate (even a minute a day is good - check out Rick Hanson, Ph.D. Wed nights Zoom (Buddhist talk and meditation).
Make time for yourself.
Do something fun / figure out how to renew yourself - on a regular basis.
Hire caregivers or whoever you need to support you.
At this point, you do what is necessary for your husband, not what he says.
He speaks from a confused brain, losing brain cells and through fear.
He will never want what is needed for himself (or likely be able to consider you/r needs.)
You NEVER argue with him. It is just an energy drain and will serve no useful purpose. You say "I hear you saying xxx" then change the subject. Do not get into a "I'm right (being him) and you aren't (meaning you).
You must take care of yourself and do what is necessary, even if that means placing him in a facility. You do not 'give him a sense of ownership' if that means listening to what he wants. You offer COMPASSION by listening, reflective listening (to a degree he'll get it) and then you do what is necessary - for him and for you. YOUR life is not over. You need to take control and make some hard decisions.
Gena / Touch Matters