I really want to know something. You can respond here or look up my e-mail address if you want to be more private. I'd never share your response.
This is something I never get to talk about with anyone but my counsellor, one on one. And she doesn't have any experience with a spouse of her own in a NH suffering from AD. She DID, however, have to place her 90 year old father last year (who died recently), so she does have some point of reference. I refuse to visit John with any frequency any longer. If you know me and read my posts from time to time, you know some of the hell I've experienced before and lately and that my marriage was seldom a "day in the sun", so I'd kind of made my own life and interests, seperate from John. When I go to visit John at the nursing home (which is very nice, but barely within a 50 mile radius from my home), it is never pleasant. I've tried to learn to "speak AD". I've tried to entertain him in various ways, talking books, reading to him, offering his own TV, (he has a phone of his own, but doesn't know how to use it or answer it), I talk and talk, have sung to him, tried to lie by his side or stroke him or hold his hand (he doesn't want to be touched anymore). I just get told to shut up or sometimes he'll start his accusations of what he imagines I'm doing at home without him (he doesn't remember where we lived, sometimes thinks I live there at the nursing home). I HAVE simply brought a book and just sat there and read for an hour or two in silence, just to be present. I've seen that he seems to brighten up when one of the staff brings him icecream and feeds it to him. Not me, though.
The staff says he seems very angry and they "don't know why", which makes me feel badly. I don't think he knows one way or another whether I come to visit....or how often. He never remembers when he's had visitors or if the girls have ever come to visit, or called him. Says he's never seen anyone and that no one cares. There are a lot of problems stirring up lately because (as his healthcare surrogate) I've requested no further heroic treatments for his blood condition, to discontinue the Namenda and Aricept (which he's been on for several years now). I understand the implications and we had a discussion about it all when he was taken from the hospital to the NH....when he was more cognitive. I just figure I'm being the advocate he would want. The NURSING staff objects to my point of view. Now Adult Protective Services are in my business (yes, I just tell everyone to talk to my lawyer). I'm just done with it all. I don't want to visit. When I break down and DO visit, it always ruins me for another week or two. Low as I can get afterwards. Does no one any good . What I read here is that everyone just LOVES and cherishes those visits and longs for more time together. I don't . I want it all to go away. The only way I've been able to get back up off the floor recently is to STAY AWAY from there. I feel like a monster, though, privately, when I give it thought. Is there anyone out there like me???? Or, am I such an exception. You all have been such a help to me at every turn. Jen
I am going to video tape a conversation with my DW about her wishes soon, Then there will be no doubt about her wishes. I am going to wait for a good day. I would like some input on the questions to ask, so that all issues will be covered in addtion to a living will. I am just thinking seeing her say it, will take me off the hook, so I will not feel guilty when the time comes.
Wish I'd done that, moorsb. YES, it WILL take the burden of proof of your wife's wishes off your shoulders. You won't have to prove anything you've discussed to anyone. To help in that respect, maybe you could enlist a witness and her doctor (who could hopefully attest to her ability to understand the content of the discussion?) to be present at the interview?
Jen, I don't feel like you are a monster, just a human being with limits to what you can handle and still be mentally healthy yourself. Living on a cattle ranch for most of my adult life, there were a few times when we had to cut cows from the herd and they would not cooperate and after so much chasing this way and that, something in the cows head would just snap and she went bonkers, wild, even attacking which is not normal for cows. Those cows had to be put down as they never came back around. I use this as an example that there is only so much anyone or anything can take and each has its own limits. Just because some of the folks on this discussion feel only love for their spouse doesn't mean that is the only acceptable way. I go from one end of the spectrum of feelings to the other sometimes in moments. First tender and sympathetic to utter frustration and anger. Each of us has our own set of circumstances which are so variable it can't be the same for all of us. You have to figure out how is best for you and your spouse. If that means you don't go to visit but make arrangements with the home that you will call and check on him to make any decisions necessary, perhaps for the moment that would be best, especially if your visits cause more agitation. When I think about the marriage vows and what it implies as to "in sickness and in health", I feel like if I'm making sure he is taken care of properly, that doesn't mean I have to do it all myself. Moorsb-when I left my H in a nursing home for some days of respite, they asked if I wanted a DNR or not. Since we early on discussed these things and did all the paperwork at the law office together, I know and our lawyer knows, exactly how he felt about those extreme measures sometimes taken. Still when I had to answer that question out loud, I thought my head would explode. I wish for us all to make the right choices, whatever that means for each of us in our unique circumstances.
We had all this done through an Elder Law Attorney before AD really got to my DH so all I would have to do is to make sure the info gets to the right people. We have it for finances and medical.
Jen, I will tell you what I did when my husband was living in an AD facility. In the early days he would just pace and snoop and get into trouble so it gave me something to do when visiting....I would walk with him and sit with him the few times he would sit. When he became bedridden and uncommunicative I would visit every day and would go to his room to check on him and then would go and visit with other residents who were still mobile and "with it". Some of them had very few visitors so I became their "friend." I found it comforting to know that I was there to make sure my husband was doing okay but made sure that I did something for myself and others at the same time. Sometimes I would help set tables or help with activities....I was there but didn't have to break my heart just watching my husband lying in a bed slowly dying. The staff knew me and we became friends.....I knew my husband would get better care that way. I also think in your case, with who knows who is watching you, it might behoove you to visit but then leave before the nightmare starts.
Jen...when John first entered the NF eight months ago, I spent all day everyday with him. Then I went to twice a day. (morning and late afternoon) Then to once a day for 4-5 hours. Back then time meant something to him. Now he wouldn't know if it's been an hour or three days since I visited. He knows me, is sweet and affectionate and the time we spend together is quality. He has never said where have you been? You didn't come yesterday or anything like that. Like you,the demands of basic survival require much of my strength and energy. My visits are now every other day because I miss him if I go any longer than that.
Continue to see your husband on a schedule that is good for you. Make your presance known to the staff because of all the leagal garbage you're going through. Reading and talking to others are good ideas. You'll always know you did the right thing. Good luck cs
Jen, you have a tougher situation than most of us because John acts so hateful to you. Maybe Sandi is right. Let John know that you're there but then visit with some of the other patients. Just in the few weeks that Jean has been in the NH, it's surprising to me how so few people visit their loved ones
I would suspect that AD amplifies whatever is already in a marriage.
My confession and dirty secret: Married 22 years. I did not get "I love you's" until the symptoms started and she was forced to quit working and I took control of all the money. Now she is more coperative and friendlier and has said 'I love you' more in the last 2 years than in the first 20. . . . Sure, It is nice, but why now ???
I will walk the path to the end because that is what I promised to do (and it may be a kamic thing) but when we get to the down slope, I am already planing on seeing that it is as short and easy as possible. And Yes, I am already thinking about what I will tell APS . . . .
m-mman......APS WILL be in your case, even with right paperwork in place. I assure you, especially when it comes to making hard choices. I now know that Nursing Hones are just a business and they want to keep thier clientele. At all costs.
Jen, m-mman and zibby - we are all in the same situation. Since his affair in 1984, it has been in marriage in many ways name only. We stayed together initially because I felt 'why not, no one else would want me'. Then there were the kids. What made it possible was we enjoyed many of the same things and activities. We had our love of RVing and traveling to enable us to workamp. Now we can no longer due that. Now I sit at the computer all day and he watches TV or putters in the shop - unless I plan something. Frankly, I am tired after 38+ years of planning. I am just happy to do my own thing. He has said and I agree that as soon as the VA says he is eligible to go into their facility, he will go. Once he doesn't know me, at this point in time I have no plans to visit on any regular schedule. Between now and then, I am just bidding my time. I am trying not to resent this intrusion into our plans to work and travel, to being tied down more or less, etc. I have not shared these feelings with him, but when a man can not be intimate, could not get past his ego or care enough to find out why (ED started at least 15 years ago), let me take the blame that my weight was causing him to not desire me (I weighed under 200 then), will only hold my hand and show affection in public to give the appearance of a happy marriage, when "i love you' are words I have rarely heard since he got caught in his affair - I can not imagine being there for hours in the AD unit. I will be honest and say there is a chance my feelings will change as time goes - I may find more feelings and emotions for him than I realize. Only time will tell.
So Jen, do not feel guilty. The way you describe your marriage, he did not earn your devotion to take the verbal abuse he vomits on you when you visit. I do like the idea of if you do go, say hello to him then make friends with the residents. I agree that many have little or no visitors and if you are comfortable doing this, then do it. I know my FIL is rarely visited by my BIL in the VA Alzheimer unit. He told us he visits, but according to the nurses, they only see him for the financial meeting once a month. If we lived closer (3200+ miles away) we would go just because he is hb dad.