I keep reading posts from spouses who are determined to keep their partners at home, but I envy those of you who have placed your spouses in residential care and wish I could do that now. This early stage of AD is miserable and I know I can't do this for the long term. Sometimes, I fantacize about just getting in my car and leaving the craziness, the yelling, the meaness behind.
you are not alone Lynn. I dream of when he is placed - can't come soon enough for me. My only concern of when he is placed, what will I be left to live on?
Can he be left alone? Do you have an exercise class nearby? Or friend you could meet for lunch once a week? You need to get out occasionally to save your sanity. Oh I know, you will get yelled at when you get home, or put through the third degree. I was accused of meeting a lover or stealing all his money.
After he couldn't be left alone I hired someone to stay with him. I told him she was there to help me clean. (And she did). Later I had another woman a second day of the week. I did keep him home to the end but I always thought I would place him later. It was actually easier mentally when he could no longer argue with me. In the meantime there were the days of violent aggressive behavior. Then the notable day I called the police and he ended up at the hospital.. Hang in there, You will get through this.
Lynn12345, I knew from the very beginning that I would place my husband but was not sure when. What I did In the early stages is get help to come into the home once a week and that progressed to respite for weekends here and there. These were all steps I took to,prepare mostly me for,placement. I would encourage you to start getting your ducks Ina row now even tho you might feel he is no way ready for placement.,,the decision will be when you are ready. I spent time researching facilities, getting my finances and paperwork together as I knew I would have to apply for Medicaid. As I look back now I see with greater clarity the journey I was on. It was the hardest decision I ever made in my life but I had to do,it to survive. It has been 8 months since his passing and I have no,regrets. I did the best I could and so are you. It is a devastating illness on so many levels. Please continue to post as you go. You will get lots of support. God bless.
Your getting some good advice. Get your ducks in a row, look for the place you think is best, arrange for respite. I did all of it and I sure am happy I listened to that advice. There were times when I thought I would have to call the police but he went into LTC on his own. Now he tells me that if we were living together we would be divorced in two years. If he has hurt you physically then he needs to leave your home fast. I don't live in the U.S.A but I have heard many of you talking about a manager to help you do the searching and paper work. There are lots of folks here with lots of information for you. Keep safe
Lynn12345, it sounds like he isn't ready for a NH (but possibly for an ALF). Do meet with an Eldercare Attorney to investigate how to plan financially for NH care.
Until that happens, are options such as adult day care or in-home help viable?
I mentioned LTC once and DH got very upset. There is no way he would even agree to a visit. He is still independent in his self care with the exception of cooking which he never did anyway. He walks to town on his own, visits the store and buys stuff we don't need, chats with anyone who will speak with him as he goes along. I love the hour alone while he is gone, but dread hearing his footsteps when he returns. The non stop questions, following me around, complaints, and confusion is what is driving me crazy. We are in our condo in FLA until end of March, then we return home. I have an appointment in April with an eldercare lawyer to get documents reviewed and new ones created so that aspect will be covered. When we get home, I plan on starting a search for support services and LTC for the future.
Lynn, I just saw a quote from somewhere this morning about "do you ever want to just get in your car & drive....3000 miles away....and change your name?" (paraphrasing). The answer is YES! Unfortunately, I'll have to be satisfied with 3-4 miles to the grocery store, & maybe with 'company'.
Charlotte, I hear you loud & clear! I guess it comes under the heading of being careful what you wish for!
No you don't need to do better--you are fine, Lynn. If you can't vent here, where can you vent? People here get it and, having been through most if not all of it, are totally non-judgmental. You name it, someone here has experienced it--poop, agitation, confusion, forgetfulness, driving without license, falls, financial mis-management, the "I want to go home" routine every night (when they are already home), being adversarial, etc., etc. etc. You may not be ecstatic (who is?), but you are doing it. God bless. He's lucky to have you.
I'm with elizabeth ... you're there for him, for better, for worse ... so important to your hubby, even though he doesn't get it ... as Elizabeth says, we understand totally. This is such a terrible disease. Hang in, and God bless.
Lynn, I hope you are OK. One thing that occurred to me is that you might enlist the services of a professional geriatric care manager. That person might be able to suggest ways to get your husband out of you hair so you can have some time alone. He may not be at the stage where day care would be appropriate but another idea would be to try hiring an aide to be a companion for him. Like you, I needed to get away from the constant Alzheimer's behaviors. We had an aide for many years whose main job was to act as a companion for my husband twice a week. They went grocery shopping or to Costco together and he really enjoyed the outings. Later, we also had an aide who would take him to museums, or to see horses at a local stable or dog or motorcycle shows at a local exposition center. I really appreciated the peace and quiet while they were gone. I hope you can come up with a plan that gives you a break from the craziness of this disease.
Yes, Myrtle, I am doing ok for now. We are in Florida until the end of March so DH is able go out for walks to the store and just generally enjoy some independence. It will be more confining for him when we return home but at least he can get out in the yard and do some Spring cleanup. Your idea of having an aide be available to take him out every once in awhile is a good one and something I will have to figure out. I know he will fight the idea.
His angry moments have lessened because he is happier in the warm weather. I am not feeling it however, since I usually fly home to Maine for a week or two to ski which is something I have always loved. I guess that's in the past now. As long as I keep it all about him, we are doing ok for now. Do I resent this...... you bet I do!
You bring up a good point - about putting our spouses' needs ahead of ours. I believe this is what eventually happens in almost every Alzheimer's marriage. We begin with small accommodations to our spouses’ needs, continue with larger but still reasonable concessions (like your foregoing your ski trip), then little by little, our whole lives become one big, continuous accommodation.
I was thinking the other day that the biggest effect this disease has had on me is that it has permanently relegated me to the end of the line. I am fairly good at figuring out ways to give myself a break, but in the end the truth is that it is really all about him. Strangely, I don't resent him for this but I also do not think it is right in any way, shape or form. It’s just wrong.
About the aides. . . I never told my husband the aide was a companion for him. I told him she was there to help me and he was far gone enough that he accepted that. I hired her privately from a list kept by our Senior Center, so she did not wear the uniform of an agency. She was only 30 years old with lots of energy – he had a lot of energy, too – and she acted like his pal. He had already stopped driving, so it gave him a chance to get away from home without me. She came for 3 hours twice a week. When I sent them off on errands, they would get ice cream cones or split a hot dog at Costco, so it was fun for him. After he got used to her, she started to shave him with an electric shaver and he seemed to like the attention. She still works for us once a week even though he is in LTC. She is there this afternoon, which gives me a break from visiting.
I envied those whose spouse was in a care home for quite a while. Probably years. But I had to wait until the time was right for me, and for my spouse. He has been in now for two months and one week,and it is well. He is ok with it, and I have come around. I was very unhappy the first month, but I now realize that was the best for me and for him. I can now enjoy being a wife, and leave the care to the many people that work there. I had to get my emotions in check. Lynn, you have to start working on it now. you need to get your husband to accept help from others, take him to daycare. Get some behavior meds from your doc. Listen to the advice from these women, it is good. You have to get out of the situation some. Just do it!