What a useless emotion but I find it lives inside of me. Amber I was happy reading your post on your sailing trip with your new mate but then I felt guilty, how can I even think about something like that right now, feel guilty about even dreaming of a life after. Stupid isn't it. Get over it, I know I will but having to even deal with it is such a waste of time. I moved on quickly from my first marriage of 20 years (15 married actually) but there was always guilt over the boys, I had them and was a single parent but still guilt over disrupting their lives and not giving them a home with a mother and a father even though I knew I was doing the best I could.
Right now when things are starting to really change dw asks me all the time are you going to put me someplace and I say no. Right now I know there will be guilt over having to force her to go to day care, hasen't happened yet but will. I know the guilt will raise it's head when the time comes where I must place her for both our sakes. My fear is for me I think that time is getting closer. I don't want guilt I want to feel I am doing the right thing. Is this guilt or is it something else?
In a previous thread read that guilt implies intent no intent should be no guilt. true but why does it always raise it's head. I wish there was a guilt pill.
No need for guilt when you are obviously turning yourself inside out trying to take care of her--and that does not mean always doing everything yourself. Also, it won't do her a bit of good if you collapse from the sheer, exhaustive grind. Who would take care of her then? Adding to the "care plan" when it becomes appropriate by sending her to adult daycare...or by adding some aide time...or by eventually finding placement for her while you are able to get some rest while still monitoring things closely...is reasonable, sensible, and certainly taking good care of her...just perhaps in a different way. And hey, we've all been there, I think...wondering what life would be like without our ill spouse....the freedom we would have...the fun things we would do...and then we feel terrible for even that little bit of mental flight-of-fancy. Or we snap at our ill spouse, or roll our eyes when they ask to go to the toilet again for the fourth time that hour...and then feel bad because we were not perfect examples of saintly sweetness and light. Rona, as you take it day by day and devise the care plan as you go along, you will know you are doing the right thing. You know her better than anyone, and you are in a better position than anyone else to make those difficult decisions when the time comes. You love her, you are there for her, you are hanging in there through the miserable, thankless, nightmarish Alzheimers process. Guilt??!! No way. She is fortunate to have you.
Rona, I'm not sure it's a good idea to say, "No," when your wife asks if you are going to "put her someplace." Maybe it would be better to tell her that the only reason you will move her is if you absolutely cannot take care of at home any more and to assure her that wherever she is, you will never leave her and will always take care of her. I say this because some people are "with it" enough when they go into LTC to remember what was said earlier and might see it as a broken promise.
The day care thing is tough. Many people have trouble with this. I originally told my husband that his doctor wanted him to go there, but it did not work and he resisted going in when I dropped him off. When it looked like I was going to have to stop bringing him there, I told him what was close to the truth - that my work sometimes required me to go into town or to other cities and I was not comfortable leaving him alone all day. So if he did not go to day care, I would not make any money and could not pay our bills. That explanation worked. When I brought him the next day, he went in without complaint and when I picked him up, he asked, "Did you get a lot of work done today?" He ended up going there for 2 years.
(The above post was written by what Gourdchipper calls my "left brain." My right brain has a lot of thoughts on the subject of guilt but I will write that comment later.)
Good point about not promising never to put someone in a nursing home or "someplace." It's better to say that you promise to stick with them all the way, and put together the best and safest care you possibly can. Be vague about the details.
Thank you all. When asked before I would always say I will take care of you for as long as I can why I switched to no? I think because usually she is much more emotional when the subject comes up now and it does a lot she equates going to daycare that I a trying to get rid of her. So wanted to assure her. I have also realized at this point she really doesn't comprehend what ever I say.
Rona I always said to my DH that I would take care of him at home as long as I could. And when the time came to place him, I remember our discussion, and I told him that the time had come that I could no longer look after him - he needed more care than I could provide. So he was always aware that at some point I would have to place him, and I never lied to him.
As for guilt, now I am struggling with the guilt of feeling happy. He is well looked after where he is, I can be his wife and give him the love that a wife gives here husband, instead of treating him like a patient with a worn out care giver. And I generally have the freedom to do what I want, when I want. which makes me truly happy, for the first time in years.
Isn't it a shame that after being a loving caregiver, with everything we go through, that if we ever get to start feeling happy again--we feel guilty? I truly believe that our loved ones would not want us to feel guilty for being happy. But somehow, even knowing that doesn't help a whole lot...
I feel guilty for thinking about a time when I only have to take care of me, when I can sit down when I'm tired and go to bed when I'm sick--when I can actually "retire", because so far that retirement date was just another day on a calendar.
Yesterday in "Dear Abby" they were talking about wives having worries when their husbands retired--like that they would be underfoot all day, or that they wouldn't have enough money for the lifestyle they want. Those things seemed like dreams from another world. They have no idea what "underfoot all day" can actually mean! And if they think finances in retirement with two well spouses can be hard, they should try it when the husband loses his job at 54 because of dementia, and the wife is already disabled. Frankly, I think if we ever get to feel happy again, we will have darn well earned it!
But even as I write this, I feel guilt rising up inside me, because any easing of this situation means that DH has either passed beyond my ability to provide care for him, or has passed away completely. Such a terrible price to pay.
My husband is in LTC and I do not feel guilty. Why should I? I have done nothing wrong. But a lot of people expect me to feel guilty. They say, “You had no choice,” or “Don’t feel guilty,” and when they learn that I visit him 5-6 times a week, they say, “You don’t have to go that often,” or “There’s nothing wrong with staying away for a few days.” Well, I did have a choice, I don’t feel guilty, and I do have to go that often because I miss him and I need to be in his physical presence for whatever time we have left. So I guess what I should feel guilty about is not feeling guilty.
Of course, it’s easy for me not to feel guilty. My husband is getting excellent care and daily entertainment designed for people with dementia. He has friends who are at his level and he is happy. But if he were not happy, maybe I would feel guilty. People often feel guilty when they have done nothing wrong. Here is an extreme example. Parents admit a young child with cancer into a hospital for surgery and chemo, which might save the child’s life. The child suffers from the treatment. The parents feel guilty, even though they have done nothing wrong.
Rona asks, “Is this guilt or is it something else?” I don’t know.
Guilt is dangerous because it can easily turn into resentment.
I feel sad about what my wife is missing in life, but this is truly due to her FTD and not her being an an ALF. There is no way she could join my son and me as my son moves to college this week even if she were living at home. She could not handle such a long trip and the chaos involved in moving to campus. I hide some stuff from her, such as freshman orientation, just so she isn't disappointed in not participating, but I don't feel guilty about enjoying taking my son to his orientation.
It helps that her sisters had been encouraging me to put her in LTC over a year before I had done so and insist that I don't feel obligated to see her every weekend (but it is fine with them if I do). They realize that this has been a very long trip and they worry about my health.
Also, her presence was very bad for my son's mental health. I saw a big improvement in the last 2 years for him.
The ALF is taking better care of her than I could. The caregivers I hired at home felt she couldn't continue at home and I was responsible for caregiving all the time I wasn't at work.
Feeling that you could be doing more is natural. I feel that often too.
My husband is not in LTC. I did try the day respite but he made such a fuss that it was more stressful for me . that is why I am dreading the time when LTC is needed. I think about it a great deal.
One of the things I have done in the past to get through long New England winters was to plan a wonderful summer get away, where I/we would go, parks that we would see, hikes we would take. I'd plan the routes, going from one attraction to another. Maybe go to Maine. Maybe go to the Grand Canyon. Perhaps even Hawaii. Not able to do it all this summer? Maybe we could save Grand Canyon for another summer, maybe we'll never get to Hawaii. The moments of fantasy helped getting through the dreary present of winter. I do it now, knowing that any trips, life, moves, I make will not be "us" but will just be "me". I do it now; it helps to get through the dreary right now. Can't go out any evenings right now, Lindylou, just wait. Have plans waiting, knowing if/when I go, there will be some sadness, but my partner would want a good vacation and a good life for me. The partner I've loved all these years does want this for me. So sadness yes, guilt no. At least for me.
Hi j-Dbarr know the feeling. Tried day progrAm, was more stressful for me I spent the time just recouping from the battle to Get her there then going through the anger when I picked her up. Same with taking her to respite have done that twice and both times difficult. However in December made the decision that I would place her, just making that decision seemed to help me. I see from your address telus.net you are probably in BC as I am. Have you started the process of looking at placements, do you have a case worker? If not I suggest you do, just that the system works slowly and having those things in the works prior to reaching a crisis situation is necessary or your options can be limited.
I was offered a placement but turned it down as was not right then had to fight to stay on the list. So right now could be anytime or could be a few months. In the interim I am lucky I have a great worker who comes and spends 24 hours with Lisa and We have our cabin where I go and spend the time. Trying to do this every week, week 4 and working well so far.
Even so I am finding that the longer I am waiting the more anxious I am becoming, anxious saddened about the process of actually placing her. I know it is time but also know it will be a hell of a thing to do.
i don't feel guilty over having placed hubby at all...he has settled in very well and has much more stimulation and activity than he had at home...he has people who look after him very well and he seems totally content to be there and is probably well on his way to believing this is his home, if he hasn't already...The one thing I do feel is sadness...I find it so sad that this is what his life has been reduced to and that after working so hard for all his life, that this is how it has turned out for him...it seems so incredibly unfair and cruel...What I have yet to learn to accept is that the sad state of his life is sad to ME as I see his world in a totally different light than he does...he on the other hand seems as I said content, not stressed or unhappy at all and that is a good thing for us both...it is still hard to visit without crying even after 2 months but that will improve with time...so sadness? yes, guilt? no
Well said, 29scorpio. I feel exactly the same way about "this is what his life has been reduced to and that after working so hard for all his life, that this is how it has turned out for him. . ." So very sad.
29scorpio, That's how I feel, too. No guilt at all but much sadness. Not just sadness about what his life has been reduced to but also mine. I just cannot break away from him. Tonight we sat in the quiet sunny dining room and he chattered away nonsensically. He suddenly leaned over, kissed me lightly on the lips and said, "I still love you," then continued with his gibberish. Even though he is in Stage 7, he continues to remind me that we are in this together.
What I wouldn't give to hear hubby speak again...it's been a solid year or so of him not speaking at all so I would love to hear something from him even if most of it was gibberish, it's just been so long since I've heard his voice...I think that's part of the reason I feel somewhat awkward when I visit him...we don't have any conversation, it's just me talking which can be frighteningly boring and I'm very much out of my element at the care home (as opposed to having no conversation but both of us being at our home which never felt awkward) I really, really, really hate what this has done to him and us :(
29scorpio, That must be so frustrating. Does your husband react when you speak to him? If I remember correctly, you husband has not been in the care home for very long, so I hope you are able to feel more comfortable there as time goes on. It's sure hard to get used to. It took me a while but I am quite comfortable in my husband's facility. Even if he falls asleep in a chair, I sit with him and read a magazine, although if he falls into a deep sleep, I pack up and leave. I also take him out of the unit -- to the lobby or the rec room -- just to give him a change of scene.
Myrtle unfortunately, I don't really see much reaction one way or the other from him...I know there is a certain amount of cognition as during one visit I had brought along a colouring book and crayons thinking maybe he might participate and doing something no matter what it is, helps me keep a lid on the emotions...anyway I saw one picture in the book had some small hearts on the page so I said why don't you colour the hearts and lo and behold he picked up a crayon and started to colour just the hearts so clearly there is some understanding there...but as for any outward signs of being glad to see you, not so much there...it's like he's devoid of the ability to react in any way...once in a blue moon you might get a small smile but that's about it...I always give him a kiss when I see him and I get an open lipped kiss as he kind of resembles how some elderly get and they always have their mouths kinda open...yeah he doesn't put his lips together even...its really just heartbreaking to see him like this...I agree with you that once I get more accustomed to the rhythm and routines of the home that I will feel more comfortable and that it will just take time...
I am totally stressed, so I guess part of it is guilt! I am very sad, ,My DH has done wonderful since placement in November. Me, not so well. I am relieved I don't have the physical part, but I miss him. I'm lonely! Friends and family are not here. I try to go to nsg home during scheduled signings, helps my DH and we don't have to talk.
Ky caregiver, what you are experiencing is pretty normal--at least it sort of goes along the lines of what I experienced when I placed my husband. My stress level did not go down as I thought it would but was magnified because now I was sort of managing things from a distance and visits became drudgery for me and so very sad. I think once we place them, the loneliness becomes more palpable because we are with ourselves more and the house is quiet. I had family and friends but they seldom called to see how I was. Sometimes the loneliness just felt like a black hole and now almost a year out I still have it although not quite as intense. I felt incredibly guilty when I placed him --sort of like I had failed him in some way. As I reflect back I think I realized on some level that I could not survive it if I kept him at home. It was just another step in the journey.
Haven't posted for awhile Lisa still at home but placement getting closer everyday we are on the urgent list so should be sometime in next weeks or maybe even another couple of months. I feel the stress as the time gets closer wanting the call but dreading the process that will follow. Like your experience Ky caregiver, I feel she will adapt fine it is me that will have a hard time. I Am hoping that once placed I know my life will change I know I will spend my time visiting and I know I will be lost but I am also hoping I can pick myself up and start to live my life again doing the thinks I haven't been able to do, Ie working at getting my self back in shape golfing etc. Co2 I am hoping my stress level goes down and I can start to live again but from your comments and others maybe I am not being unrealistic. I hope not.
It helps to have others on your team to provide care around the clock but the guilt is just so intense! It is also heartbreaking to go in and see them sitting alone in a wheelchair among everyone else who is 20-25 years older. Broke my heart every single day!!!
Rona, when you place them it is difficult to say how,it will affect you. I do,know that the placement was harder on me than him. I have to say that in some ways it was a relief to just have the responsibility of visiting and not the 24/7 care but having to learn a whole new system, caregivers, etc etc was not easy. I would go at dinner and sit with him while he ate. It is the right decision as it was for me but emotionally difficult nonetheless. The visits were exhausting for me as I would try to engage him in activities but gave it up after I realized he could not participate any more. Once they moved him to the nursing home in February, he passed less than 3 months later. Let us know how it goes.
It has been almost 3 months since hubby was placed...I still find it hard to visit...with hubby not speaking for so long now, it makes the visits a little on the awkward side sometimes,but we are slowly finding a rhythm...I had thought that once he was placed I would be free to do what I wanted like go to bingo or shopping or whatever whenever I wanted...maybe even have a nice long soak in the tub which I haven't been able to do for a couple of years now, however I don't seem to have the motivation to do any of those things, at least with any kind of regularity and I found that rather surprising...I haven't found a routine, nothing that even comes close to having a routine and that irritates the living daylights out of me...Rona, once your wife is placed, you will find you are overseeing how she is adjusting, trying to familiarize yourself with the workings of the home and making sure her needs are being met...it is a bit of a double life in that you will then be able to participate in things you want to do, but you will also have to oversee her care from a distance...I wouldn't expect too much of yourself as far as getting back into activities that you haven't been able to participate in for a long time, you might just want to take some time and chill while you're adjusting to the new situation and not put any pressure on yourself to jump right back into the swing of things until you've had the time to recharge your battery. Hope it goes ok when it's time for the move...
j-dbarr: DH is still not in respite or day care. I do have a care person once a week for 2 hours, but it is really not enough for me to be able to feel free. DH resents the care giver and this male care giver is very kind and good. He does not provide personal care as I do all that, but does take him for walks, rides and ice cream. I find everyones comments on placement interesting, I do not think I am ready for DH placement yet, but I do find I am exhausted trying to be with DH 24 hours a day, plus the nite time wandering. His speech is not always understandable or follow any pattern, he does not understand simple requests, and is now becoming fearful of any TV that has violence including the news. I am at a loss !
Saddness, my DH had the same experiences with the TV as yours does. He seemed to think that the shows' characters were real people in our house having these confrontations, which scared him. We were reduced to watching old cowboy shows, game shows or NCIS re-runs. Later, he could not follow conversations so even NCIS was too much for him. Sigh!
My wife was that way for a while, too. I remember asking her one night, "Would you like something to drink?" and she gestured at two characters on the TV: "What about them?" Nowadays children's shows and movies are best. Maybe the Andy Griffith show.
We watch the Golden Girls (family friends, I believe she thinks they live here). Also cooking shows, antique shows, and she can put up with rehab shows as long as there is no bickering. Can't watch love it or List it because they argue. Nothing with violence. I miss the news, but now that I think of it, the news is anxiety making even for me.
Sadness, You are in a very tough stage. The exhaustion is the worst.
RSA, That's funny!
Lindylou, Like your partner, I find, "Love It or List It" to be kind of annoying because of the bickering. Writers try to build some kind of drama or tension into stories and that's hard to do in TV shows about real estate, so they build in all these disagreements about "he wants Craftsman style and she wants modern," which are so clearly exaggerated. One rehab show that features a very sweet and funny family is "Fixer-Upper," which is on Tuesday nights. I love to watch it, so you know what I'll be doing tonight.
My partner started confusing the TV characters and action with reality too, and actually had a big meltdown one night in the nursing home, barricading himself in his room because he thought something scary was going happening and didn't know how to leave it or shut it off. He was never a TV watcher until the AD (except something educational occasionally).Now he often prefers TV to his music, and although he never had any interest in cooking, the Food Channel has been the safest option, as nothing much scary happens on it. However, when I am there to change it, there is an Arts channel with some music shows I watch with him that he can still engage with. I'm glad he's not in one of those homes where the TV is on constantly in the public area. This home has an aviary with birds the residents like to watch (I call them the bird watcher's club), and a dog that has free range. He is mostly happy. It is me that is sad, for the losses of course. But if I can be in the present moment, which is where he resides, we can still have interactions that are fun and sometimes meaningful. Sometimes he laughs at a commercial or has learned a song from one & still finds some delight in some moment. I often spend some time listening to some music with him too, as music works on a different part of the brain that isn't where memory resides. So while he cannot speak much these days, he can still sing a song. He was a musician, so I give him a rattle or a drum, and sometimes he plays along. His attention, communication, and behavior all are improved by music too. So I've learned to be in the moment with him - it's all we have anyway. (It is way better than when he was still at home and I became the hated witch that wouldn't let him do things). And then there are nights like last night where he he sat with his eyes shut and refused to engage in anyway, with the exception of me feeding him a yougart I brought him. It is what it is. I wish there was a special TV channel for people with dementia. Short, non scary episodes with color and music, and peaceful or funny vinettes of animals or nature. Nothing like that on the NH cable. One of the best things we do lately is watch the progress of a live eagle nest cam, and check in & see how the baby eaglets are doing. Things on small screens he can hold work well and engage him, so an ipad might be useful. I bring my laptop or just use the phone to show him funny videos on youtube. That is another visit option. Will be happy when it warms up enough to go outside. Still cold here.
"I wish there was a special TV channel for people with dementia. Short, non scary episodes with color and music, and peaceful or funny vignettes of animals or nature."
mariposa, a friend of mine made some DVDs of this kind for my wife. I can stream video to our TV as well, so aside from nature documentaries on netflix, I sometimes look on youtube for videos made for cats or dogs. They tend to be about birds and squirrels and such, pretty peaceful.