I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. It is part one in a series about the evolution I have gone through as an Alzheimer Spouse. I am only able to tell my journey, but in doing so, I hope that you will relate it to your own. My hope is that it will help the new members who have not yet encountered some of these stages, and that it will give validation to those of you who have gone through them. I am taking my time, and writing it as a series of what I think will be three blogs. I'm not exactly sure how many there will be until I write them.
Please post comments here and tell us how you have dealt with the stage I wrote about today.
Joan I dealt with it identical to you. Only after having to place DH have I stopped trying to reason with him. Maybe because I am no longer trying 24/7 has that changed. I love him, but not in that familiar way a spouse does. If that makes sense. I am still numb and trying to survive the pain and heartbreak. I know it will always be there.
Joan, My experience was the opposite. When my husband was diagnosed, I did not need a social worker to tell me what would happen to our life together. At that moment, I knew there was no hope. I was also terrified. I had already seen my father die of Alzheimer’s and had seen my mother spend years doing the same things you did, so I knew there was no point in fighting. Although I had rarely cried before then, I started to cry nonstop on the day he was diagnosed and I would probably still be crying now if I did not take drugs and compartmentalize my feelings so I can do what needs to be done.
I will be interested to hear how you evolved. Although I've been changed permanently, I can’t say I've evolved - I've just deteriorated.
Joan, My experience was somewhat different. I think I knew from the beginning what was in store and spent the first year or so in shock, gathering information and attending support groups. My marriage was not the best so we had been living pretty much separate lives before all this. I do not think I ever tried fighting to try to save the marriage. I was instead trying to figure out how to save myself As time progressed, I became extremely angry, frustrated and not a pleasant person to live with. I hated who I was becoming and spent time trying to find things for him to do. We tried a men's group at McDonald's, daycare, respite, aides in the home, and the local senior center. I think I always knew I would place him, but I was not prepared for the rush of feelings I had after placement. Now he is in hospice. they cannot figure out what to do about the agitation. He has been in the Hospice facility for a week trying to adjust Seroquel and he is still agitated. Social worker tells me the next step may be the Geriatric psych Department at the hospital. If we cannot get the meds adjusted, he cannot return to LTC and no one will accept him and I cannot bring him home because he literally does not sleep. Social worker tells me she has never seen a patient who does not sleep. Three months ago I would have been a basket case with this news but oddly enough I have deep peace today, as I know there is nothing I can do about the situation. I spent far too much time knocking myself out trying to take care of him even after placement, but it is now in the hands of professionals. I am just going along for the ride. It is indeed painful to watch as he continues on this slow downward path. I know I am not the same person I was at the beginning of the journey and quite frankly I do not know who the hell I am now. I am a widow in limbo--I feel like a widow but am not yet. I do think one changes profoundly during an experience like this. I find that just taking one day at a time is the best way and pray for the strength to handle whatever comes along during the day. Thank you for all you have done and share with us.
Joan thank you for this topic. I am seeing so much of me in it and so much of others. He is so changeable. One day he is such a sweetheart and I wonder why he is living where he is. I could bring him home, I think but the next thing he is screaming and yelling at me again and I know I can't. I take him back to the residence from where ever we have been and I cry all the way home. His boys don't see this side of him as he is an angel when they visit and when they leave he rants at me on the phone. I still try to reason with him but now I am cutting off these conversations by leaving or cutting the call off. Later he asks if I am angry with him. He say" what have I done to upset you." And my hearts breaks. I want my wonderful husband back!! I want my life back! The social worker and the folks on this site have and still are giving me tools to help me get through this. I am finding it hard to go out on my own or to join groups without him. Hopefully I will be able to join in to my new life but until then I will rant and cry over all I have lost to this disease. I really hurts. I have been told that he could remain like this for years, slowly going down hill but slowly. I don't want this for him but I can't do anything for him but watch.
I found this website while searching for information. I then read all of Joan's blogs and found enough similarities to begin to understand that I probably wasn't the problem. It gave me the courage to understand that the relationship had changed and to accept (more or less) the responsibilities being thrust upon me. Our situation isn't exactly like anyone's (which won't surprise), but thanks to the sharing here, I feel better prepared. The "before understanding" years were the hardest so far. If indeed we are early in this journey, I have more coping skills now thanks to all of you.
Joan, unlike you, I sat in the neurologist's office with two of my daughters calmly listening to the doctors tell us that my husband had a form of dementia, maybe even two forms. I have no idea why, but I was as calm as if they had just told me he had a rash or something equally trivial. My daughters were shocked and frightened by the news. At that time, I wasnt. Did I know already? Had I had accepted it after the previous years of change in him? I really don't know. I just remember sitting there listening with barely a reaction.
I did what the social workers at the hospital told me to do. They gave me all the reading materials and sent me to the caregivers support group at the hospital for a six week course on what i was supposed to do, how I had to take care of myself so I could take care of him, etc. I never screamed and cried at that time. I vowed I would remain calm and learn all I could about the disease. Foolish me. But, it was at that time when I found your website, accidentally, while searching for all the information I could about dementia. It was here I really did learn how to,cope with the changes in my husband. But then began his nightly rituals: fiddling with things in the garage with the doors open and lights brightly shining at all hours of the night, standing in a blizzard without a jacket, trying to straighten out garbage cans on the street in the middle of the night, me screaming like a crazy woman trying toget him inside. Him telling me I hated him and was treating him like a piece of .... One time he even pushed me, though after that one time he never got violent with me. He just used words or slammed his door to his room and locked it and would not come out. I could go on and on.
I recently re-read all the things I wrote in a journal on my computer and in several notebooks. I couldn't believe I had gone through all I did, for eight years! It left me in a terribly anxious state. I was shaking and thought I was having a panic attack. For two days I couldn't do anything. I won't re-read those pages for a long time. For the most part,I believe I did a very good job of taking care of him. I walked away once I learned what he had when he began shouting or arguing -- just walked away. My heart was breaking but I didn't want to anger him more.
All the things we caregivers go through not to upset them is mind blowing. What have we done to our selves after going through this? I'm not the person I once was. I will probably never be. He is in a LTC facility now and I thought once that happened I would feel better. Not so. If anything, I feel worse. I do have time to myself, but don't use it wisely. I can go to the places I wanted to go to before, but now my health is getting the better of me and my physical ability to do those things has been jeopardized.
I still love my husband and visit him every other day but the stress and sadness of seeing him there, of feeding him puréed food like a baby and him spitting it out reminds me I don't have a husband anymore; he's someone I once loved as a man, but he no longer is.
My situation was somewhat different. When got the diagnosis in 2009 I was very calm. I started reading every thing I could about the disease. The care giving at home for the next five years was very hard. I was very angry and resentful. I did not like to go any where; and especially with him. It just wasn't the same. We used to travel a lot and had so much fun. Finally I basically had a breakdown and my kids had to takeover his care. It was very hard for them and I am so sorry it had to be that way. They were able to see what it was really like. They had to become his power of attorney and get him placed. He is now very disabled. I am on my own for the first time in my life. I'm a very social person so I've started going places and doing things I've never done before. It is surprising that I am comfortable with living alone after 48 years of marriage. I am still his care giver although from a distance He is pretty content and I do go see him as often as I can. I am still recovering from back surgery but can drive. He is 150 miles from me so it is not as often as would like.