I woke up in the middle of the night and realized I am not happy with the way I have portriaing Lisa. When someone said Lisa looks great sand seems to be doing well I immediately responded with no she is not. I have talked to others about the things she no longer can do. I don't feel this is fair to Lisa. I should be telling them how much she tries, how through this she is trying to stay positive and happy. I have forgotten to be positive and am focusing too much on the negative.
I realized my comments to others are more about me and my struggles than about Lisa. It is more about me trying to justify having made the decision to have her placed. More about me needing to talk about what I am facing. I know I do not have to justify my decision to anybody. I want to leave friends with a positive image of Lisa and sometimes I think maybe I should be getting my feelings out more with a third person someone who is not directly involved. Are my feelings off base?
I don't think you need to feel guilty. There have been whole conversations on these boards about people saying our ill spouses "looked great", or saying "he seems fine to me", when we as the well spouses are tearing our hair out with worry, frustration and fatigue, trying to keep the boat afloat and help maintain our spouses' dignity as much as we can. Of course Lisa may look great and may seem to be doing well, Rona,--it's because you are in the background moving mountains for her--basically, you are doing all the work so she can look good...no reason to feel guilty about "telling it like it is" to friends and/or relatives who know you both. It is reaching out for understanding and hopefully some support. Unfortunately, the friends and family who we need to be supportive tend to fade away from an AD situation. We've had long conversations on this forum about that phenomenon, too.
Lisa is going to lose her self-awareness fairly rapidly, I would guess. You can stress the positives as long as you can, but it's the nature of this disease that she is going to go downhill, and no amount of stressing the positive is going to make much difference as the AD symptoms progress and become all too apparent to others. (If they're not already.) She will be in a cocoon of care (she is already), but the one that nobody is taking care of is you. I vote for letting your friends know the true picture....not feeling any guilt for being honest about a difficult situation...and crossing your fingers and saying a prayer that maybe...just maybe...friends and/or relatives will be there to give you at least some support, and don't just bail out like the rats jumping off the Titanic.
You need to talk to somebody about your struggles and about what you are facing. You may feel more comfortable with a trained counselor...others may chime in here. For me, just following this website over the past two or three years has been the best "counselor". Most people, even trained professionals, don't "get it." People here do "get it." In all honesty, you may find that the folks here at Joan's are your best resource. (And we're free, too! Hey, easy on the wallet!)
And it does need to be about you, too, not just about Lisa 100% of the time. I know she has an illness and you don't, but you do need to find strategies to care for yourself and not to feel guilty about it. You may at times be portraying her realistically, but that is not the same thing as being negative. Again, no need for guilt. Your love, concern, and care comes through with every word you write about her. Hugs. ((( )))
Rona, I am still experiencing what you feel, even though my husband died almost five years ago. I think Elizabeth is right: it is about reaching out for support and understanding. The caregiving role took, and continues to take, its toll on me.
It's not the guilt it is about preserving some dignity for Lisa. I am lucky I have friends who are there they have not abandoned us but sometimes I just feel I don't want the relationships to be all about me laying my problems on them. But maybe that is what friends are for and I shouldn't be so sensitive and lean on them more. I know I would be there for them.
I have followed others comments on counsellors and I get it they are not walking in our shoes and yes this website has been the best resource release that I have found. I have a masters degree in counselling psychology but when you are dealing with your personal struggles what does that matter things are totally different.
Rona, I personally don't feel there is any need whatsoever to sugarcoat the effects of this disease on your wife or yourself to others...there isn't any reason why you can't be honest about how things are really going and also adding some of the positives as well...I totally agree with Elizabeth in that if people are made aware of how totally this disease consumes not only the person afflicted but the caregiver as well, then maybe just maybe some will step up to the plate and get involved instead of jumping ship...if on the other hand people aren't aware of the level of devastation that comes with this disease, how will their eyes be opened other than with honesty...I am like you, close to placement and of course your thoughts and comments are mirroring your feelings as they are likely weighing heavily on you...our minds are in continual motion...all the what ifs go round and round day and night, prevent us from falling asleep, staying asleep and sometimes even inhibit our ability to have a conversation that isn't centered around this disease and how it is affecting our lives...we are mere humans tackling a herculean task so take it easy on yourself for merely being human...we all understand how you are feeling and know you are doing YOUR best in YOUR situation and no justification to anyone is required...take care
What a great topic!! Thank you Rona for bringing it up.
I get so upset when I hear" is Kevan ever doing good. There doesn't seem to be anything wrong with him" or " why is he is LTC? He looks normal to me" I just want to scream" come spend some time with him and you will find how well he is" they see him once every six months or longer and can see only what he wants them to see. He is a good actor. I am now just saying" he is progressing as expected" and leave it at that. Yes I wish someone would ask me how I am doing, but that never happens except from another caregiver. They know!! Your blessed that you have people to lean on, we all need that, but for some of us there is no one. They just flew away and unlike the snowbirds, they never return.
Mary 75 I kind of suspected that even after he is gone I would still feel the long term affects of being a dementia caregiver. It just takes so much out of us
Rona, I don't think you are taking away from her dignity by letting your friends know what is going on. And keeping her looking as nice as possible with good personal care, while not taking her into situations she can't cope with would help maintain her dignity. For instance, I wouldn't have dreamed (past a certain point) of trying to take Larry to the kind of group dinners in restaurants our "gang" always used to do. But he was fine to have coffee and maybe a dessert at home if another couple stopped by. He was good in very simple, non-overwhelming social situations right up until four months before he died...and socializing with family rather than friends worked much better for us. The people who loved him were pleasant and caring...but fast disappearing through death, disability, or distance. (Well, that's why we ended up moving out of state...but that's another story, and most of you know it.)
Hi Rona, I thought your comment was very perceptive, although of course, I don't know if you are correct in saying your description of Lisa is motivated by your need to justify your decision to admit her to LTC. Anyhow, you are absolutely right - we do not have to justify our decisions to anyone.
I think it is completely up to us how we describe our spouses, as long as we are respectful of them. I try to avoid stereotyping my husband or violating his privacy more than necessary. I want to challenge people to think of him as the same person they knew, even in his present state. Because of that, I avoid clichés ("Not well, "As well as can be expected") and try to be specific. As I explained on another thread, I usually describe him in positive terms, and give examples of what his everyday activities are and what he likes to do. But I also give examples of what he can no longer do. (I do not have Jazzy's problem - No one ever argues that my husband seems "normal." Except for what I tell them, the people I talk to have no idea how he is, since they do not visit him.)
I also avoid automatically treating an inquiry about my husband into a discussion about me. If people ask how I am, that is a completely different question and I deal with it as such, depending on how close I am to the person. I don't see why your friends (especially close ones) should not know about what you are facing or how you feel about it.
But the way I talk to people is my choice and is consistent with the way I naturally interact with people. (I tend to be direct and plainspoken, sometimes too much so.) Others have different ways of expressing themselves and I do not think that my way of communicating is the best way for everyone.
I am lucky our friends always ask how I am doing and always tell me to take care of myself the problem is distance. None are really close. I think I am getting my head around this. Remain positive but tell it like it is and don't feel bad about doing it? As 29scorpio has said at this tough time thoughts just circling In my head and hard to make sense of them sometimes. So good to get them out here.
We have a couple of people that have disappeared and when I asked my sil if she would come with me when I take Lisa to respite the response was too much going on in her life. Was not impressed. Although they are very supportive and full of advice on the phone very seldom make the journey to visit. But I did have friends who live on the mainland who knew I as taking Lisa to respite, phone and offer to go with me to take her, very Nice and much appreciated. I however decided I needed to do this on my own and at this point don't even know if Lisa would recognize them. Instead of coming with me my buddy is going to come and spend a couple of days with me while Lisa is in respite. Then I am going to go down and spend a night with other friends prior to picking her up on Friday morning. I have to look at how lucky I am to have friends, even though not in the same community, who are there for me.
Elizabeth like you I stopped taking Lisa to group outings a Long time ago. We still socialize but on an individual level at most with two other couples but always with people who are in tune with where we Are at. Just remember when we were at a happy hour in the summer with a few people and Lisa picked up a serving spoon and started eating with it, the only comment, that can be your spoon now Lisa and a smile. Everyone very accepting and inclusive. I think I am being more positive!!!!
Rona, I have been reading your posts and although I have traveled the journey and somehow by God's grace survived, rest assured that I totally get it. I think the most difficult thing is the loneliness that ensues as we go forward with this disease and not having the support that we need. I have children and they did help with doctor appointments and visiting him but they were not able to support me emotionally and no one else really showed up emotionally to support me in my pain. It was mainly this website and the Alz group I was in at the time. I mean not even his sister called once during the entire ordeal. I am not blaming my kids or his sister as I realize they did the best they could. From all you have said, I think you are doing a fantastic job with your wife, really. I would not be so hard on yourself. Perhaps instead of thinking about ways to help her or be nicer to her, ask yourself what can I do today to make my life easier. I am so pleased that you are moving forward with respite. For me respite was a big turning point. I started with a couple weekends and then finally took a week's vacation. As I look back, I can see that each step that I took was what I needed to do but each step has to be managed with what the caregiver is willing to do--and how much the caregiver is willing to "let go" of the care. It is a gradual process and one that cannot be rushed. We all know what the end point will be and "letting go" takes time. God bless
Well, Rona, I was not saying that you or anyone else should remain positive when talking to others about their spouses. I think each of us should describe our spouse's condition in the way we think is best, which obviously depends on who the person we are talking to is, how much they already know, and how much we want them to know.
My husband's case is very different from Lisa's. Your friends still see Lisa, but the people I talk to do not see my husband. Because he is in LTC, people often think of him as a semi-comatose, bedridden invalid. I feel that by stereotyping him that way, it is easier for them to dismiss him and to disregard his humanity. That's why I answer the way I do.
I was also thinking about your concern that you might be telling people about Lisa's problems in order the justify your decision to admit her to LTC. Well, so what if you are? Are we Alzheimer's spouses supposed to be so pure of heart that we cannot have mixed motives for what we say and must be brutally honest about everything? I don't think so. I hope you will cut yourself a little slack.