It's hard being in the house 24 hours a day with a healthy male, and just miserable being with one who's not well. I hear women say, "I married him for better or for worse but not for lunch." Exactly. Throw ill health into the mix and it's REALLY tough. My PWP is in good shape and I'm grateful, but he can be terribly difficult. He went through an awful phase last summer when he exploded over nothing, and I mean nothing. Fortunately, we have a terrific counselor. I called him first thing Monday morning (the explosions occurred over the weekend), teeth gritted, only to hear that he was on vacation that week. ARGH! But he said he'd be checking his messages, so I left one. Within an hour, he called, had us both get on the line, and talked with us. He called every morning that week. When I thanked him for it a couple weeks later when we saw him in person, he seemed surprised at my gratitude and said, "But that was a genuine crisis." Well, it was, but we all know professionals who don't respond at such times.
Anyway, if you don't have a good counselor, I'd say find one who wouldn't be averse to calling you when you're home bound. Also, do you have a clergy person who might be helpful at such a time? Can you reach out to friends and relatives and have them call and/or e-mail you? I'd say, use every resource you can think of. Some people will surprise you with their willingness to try to help, even with just a phone call. Others will disappoint you with their unwillingness. It's worth it to find out which is which, though.
Are you a member of a PD support group? Is there a chapter of "Mainstay" nearby? It's specifically for the well spouse. Their motto is, "When one is sick, two need help." Use every resource you can get your hands on, Pat: books, the telephone,support groups, church folks, hot lines, e-mail, the Internet (my modem is too slow for that, but I'm planning to remedy that in a while) and chat/support groups, friends, relatives, neighbors, respite care, etc. Grab whatever respites you can -- his naps, fun "light" reading (I favor murder mysteries), nice long soaks in the tub, chats on the phone with understanding friends, nice music on the CD player while playing computer solitaire, etc., etc.
I suspect many of us can relate to the constsnt interruptions which make it hard to finish what we need to do. At present, Peter is into napping---sometimes all AM and part of the afternoon, which does give me a break, and he's not demanding, thank goodness. But "very very slowly"--yes indeed, and I am a speedy type, so that means frustration and irritation, and reminding myself that he can't help it ! Another thing you didn't mention, but which I suspect others deal with too, is a sort of "perseveration"---the need to continue with some activity until it is "done" ....which means the soup gets cold, etc, etc, etc. This may be his personality, but perhaps others experience it as part of PD ? And we all know that it is madness to try to get a PWP to focus on two things at once---yet I find myself doing that so often.....asking a question about something else while he's trying to button his shirt, for example. At present, I have a nice woman who comes when I need to be gone for a couple of hours at night or on weekends. I am still active in groups I belong to. Day care would be an option, but is somewhat resisted at this point, though he has been accepted for the program. I encourage all CGs to find some sort of respite, whatever fits your situation, your schedule, your purse---you can't make a better investment for yourself, and thus also for the PWP who depends on you.
Thank you - the part about "perseveration" which I attributed to personality all this time is actually the disease. What a relief - now hopefully I will stop arguing about such things knowing that it is the disease and not the man. If I can keep that in mind it will make our home a more peaceful place.
I have found the recent spate of letters about 'Survival' a wonderful help. Thank you, thank you everybody for being so honest and letting us all know about your sometimes impatience, and even your bad temper, and of course, desperation and depression over being a carer. Until all these letters arrived I was beginning to think I was the only bad person on the List !! Everyone else seemed so wonderful.
Do keep up the painting, Jill - you will only feel more deprived if you give it up. I try to keep my writing going - am just finishing the seventh novel - all written since Ted was diagnosed. It's so important to have a job or hobby - and important for the PWP as well. Any suggestions for hobbies for PWPs????
Ted desperately needs something to keep him active - mind and body. Much love to you all. As hobbies ,anything restorative and creative is worthwhile, and it can be anything from sculpture to bread baking--so long as it gives us respite physically, emotionally, or spiritually. Some of you know (from my website) that I write poetry of a sort, and this , which I've done all my life,has been a great way for me to cope with Peter's PD---also, a small "Dream Group" I belong to, which has helped me trace my developing feelings about PD over the years. Whatever it takes--- One of the things that makes me saddest is to see Peter struggling to accomplish some simple task which he would have done in no time, with no effort, before PD. He pushes himself to learn how to work the VCR, for example, or to open the email program--and even written instructions are little help. I know that it pains him, and of course I feel for him. Then I have to restrain myself not to jump in and rescue him, until he asks for help---that's hard, too. I expect we all feel like this at times--watching someone we love overwhelmed by the simplicities of daily life. It's scary too, when so much now depends on US, that used to be a shared responsibility. That's another reason why CGs need personal space, activities, and respite just to keep going!
Pat really triggered some hard memories for me, and I live in sunny California where we are rarely homebound by the weather. Before I had full- time help with Ken, I used to take him to Daycare several times a week and I tried to join a water exercise group several times a week also. However, as Ken's ability to talk to me faded, I became more and more frustrated, and I would find myself being angry both at him and at myself. I know this contributed to the problem, but it was hard to stop myself. I too, would use either the phone or the computer to "escape." I also sometimes locked myself away from him and watched the TV. That didn't help much, but it kept me from yelling at him. My children noticed my growing anger but were really unable to do much. I really wonder what would have happened if I had been stuck alone in the house with Ken during a blizzard. I wish I could come up with better solutions than locking oneself in another room until you can face him, but that's the best I can do. Since we have had full-time help, my family says that the change in me is as great as the change in Ken. I know that having someone around who can talk sanely has been wonderful. However, I also know that since being on Aricept, Ken has been more able to communicate with me, and that makes me easier to be with. We are SO intertwined with our spouses, and this disease changes the relationship so much that it is small wonder that we become depressed and angry ourselves.
I n reading Marilyn's post and others on this thread I realized that while Peter doesn't have "hobbies" in the usual sense, he does find ways to occupy himself. Yesterday he spent a LOOOONG time reorganizing the drawer by his chair, where he keeps a varied collection of useful objects---pencils, pens, erasers, rulers, memos, etc,etc,etc. I tend to get fussy about this, till I realize he's doing something that is important to him, even if it would only have takenhim 10 minutes before PD. Another thing he spends time on, which often frustrates me if I see it as wheel-spinning, is re-reading our printouts of posts re: PD. I "re-frame" it for myself as being :
I also have to remember that the clutter it makes, like living at the bottom of a glacial moraine, is less important in the cosmic scheme of things than his being content for a couple of hours. (I only wish he didn't get so frustrated at not remembering!) So my reminder to myself is to view his activities from HIS perspective, not from MINE.
I found an Excellent resource book, "Surviving Your Spouse's Chronic Illness" by Chris McGonicle. It is well written, in simple terms, by CareGivers who have been there. It covers the good, the bad and the ugly, and does it in a non-judgmental way. If you are a CareGiver who doesn't have a support group, this book might help. It also makes you aware of some of the decisions you might need to think about in the future. I cant say I enjoyed reading this book, it made me cry, laugh, nod and agree, and want to say "no, that isn't right" etc. Its hard for me to read a book these days, the pages shake too bad. I read this one cover to cover without stopping. I hope this helps someone else