I hope I can say this correctly, without sounding compassionless, or uncaring... Is too much made of trying to keep our husband/wife engaged in life? Are we to keep them constantly entertained, stimulated, etc.? What if they're just not interested? I'm thinking that maybe it adds to our sense of guilt, & the pressure of trying to just take care of the everyday matters. I for one do not need any added pressure/stress that doesn't really need to be added. I read, from a patient himself & his experiences that he can still share, as long as they are comfortable, safe & pain free - those are the most important things for a caregiver to see to. AD is going to progress, no matter what we do.
Mim, I know what you mean. When my husband said 'I guess you'll have to entertain me now" I thought, how can I do that and take care of your needs, my needs, the house needs, bills, finances, groceries, on and on and on. And I did and do have feelings of guilt when I see him sitting alone, staring into space. But I have darn little time for myself and I feel so reluctant to give it up. My husband has no hobbies and doesn't like socializing, so that adds to it. Yes, I think I understand what you are saying. Sometimes I just feel like a little kettle that might blow it's lid, even tho I love him and feel badly for him. Diane
Mim, funny you should raise this issue. I have always tried to be proactive and get actiyites my husband would enjoy and participate in. Puzzles, map of the US, map of Europe, ABC's, building blocks, etc. so he wasn't watching TV all day. But as another poster said on a different thread, no sooner did I buy what I thought would keep him engaged and active, he progressed into a different stage and what I bought only a few weeks before no longer worked. After 3 years of this wasting money because he progressed beyond what I bought, I have finally given up. Yes, I feel guilty, like I've given up on him, but the reality is at this point there is very little I can do. I am a fighter and a warrior, so for me to admit that means defeat. But after 6 years + dementia has defeated me.
Oh, boy, is this thread for me! I feel so terrible when he just sits and stares into space. He looks so sad and lonely I find myself turning on the TV and sitting and watching with him. Arggghhh! I never thought I'd be so sick of television. There is one saving grace -- he has always been a video gamer and although 99% of them are way too complicated he can still play Diablo 3. He just runs around, pushes one button and is happy for 15 minute blocks when I have to come and sell the stuff he's collected and put him back on the right path. Thank goodness for that game! We're looking into getting him a special keyboard that has only a couple of large, brightly colored keys. I'm going to cry when he can't play any more :(
I've told myself that I would try to add one enriching activity each week -- going to the beach, sitting in the park, swimming, or something. I have to watch him like an eagle which makes it hard for me to enjoy anything.
I don't think it makes any difference in the progression of the disease, but what do I know? It lessens my guilt a little, I suppose. And he seems to enjoy it at the time, even if he doesn't remember it.
Great topic. My Kevan is in a LTC with lots of activities but I am continually having to encourage him to take part. He then tells me that the activities are boring and beneath his abilities. I could just scream. I guess if they decide they don't want to do something then we may have to just back off. I used to feel guilty when he was home and I just couldn't please him no matter what I suggested we do, now I am getting to the point of just saying" Well, my dear, do what ever you want. Your choice." I don't know what else to suggest. I pay lots of money to have him. Armed for and entertained and tough work with it guy.
My daughter and I had a conversation a week or so ago, about the place that my DH goes for respite. She doesn't like it, because although it is cheery enough, it seems like all the residents "just sit around and watch TV". I said to her "there are other activities they can get involved with if they wish, but what if all they want to do is sit and watch TV?" We are at the point where anything longer than a half hour is too long for my DH to sit through on TV. He can barely use the computer, can't read more than a few sentences, and can't follow conversation. He can no longer enjoy the hobbies he once did - cooking was the big one. And I have too much to do keeping the house and grounds in order to spend a lot of time trying to figure out ways to keep his mind active. I have stopped trying to get him involved. Its enough that I can give him the laundry to fold and find programs that he can watch on television that keep him entertained and don't require him to think. I keep him safe, fed, clean, comfortable and relatively pain free. I can't do any more than that and I refuse to feel guilty about it.
Mim when I placed DH in LTC I asked that he be kept safe, clean, fed and allowed to walk. Walking is the only ADL that he still has. In observing when I visit the NH I have noticed that some patients get extremely agitated when staff tries to get them to participate in activities that they either do not understand or are not interested in. I just walk wit DH and take favorite snacks since he quit showing interest in anything else a long time ago. I don't feel guilty about this anymore. The one thing that most of the NH residents seem to enjoy (including DH) is music. When singers come to entertain, the foot tapping, clapping and the mumbling along with the lyrics seems to make them happy. These are the days that I leave the facility halfway happy myself!
My husband is very easy-going but he desparately needs to move around and as his disease progresses, he increasingly needs structure. These needs are dictated by an organic brain disease, not by a need for entertainment or for promoting engagement in life.
When he did not have opportunities for accomplishing these things, he went into high anxiety mode. And so did I. I realized I had to do whatever I could to accomodate these needs, not because I was trying to make him happy, but because if he did not get the structure and the physical exercise he needed, it would be VERY unpleasant for both of us. This is why day care worked for us -- it was a full day of structured activities.
When I first placed my husband I was so upset because when I visited most would be sitting in chairs with the TV on. My husband would usually be in his room napping. I kept thinking to myself I need to get him into more activities. I tried things with him. They had activities but like jazzy I had to constantly encourage him and he just was not interested. For him I knew that puzzles were not his thing. He cannot read anymore and he was never a crafty person. Now 9 months later he does participate in the daily exercise but that is about it. He enjoys watching people and listening to others talk but he has trouble conversing but still tries. About the only thing he can still do is walk. He enjoys me reading to him from books that he enjoys. I am grateful that his physical needs are taken care of and I have given up the notion that I need to find activities that he can engage in. It took me a while though to get to that point.
Kevan is continually complaining that there is no one there that is as high functioning as he is. No one as intelligent to carry on an intelligent conversation with. He finally told his son about thus yesterday. Now they see some of what I deal with everyday. Last night he told me he doesn't know why he is here. When I asked what he meant he said " you know , I have no purpose anymore." I when I hung up I called the nurse to make sure they keep an eye on him. He needs structure but continually fight with them about how things are done. Activities are not at the right time or place. There is just no please ing him. He went to the bingo last night and won a chocolate bar. I expect that he had a very good time but he complains to me about how doubt or unorganized it is. He paces now and has to walk. What he really does there as far as activities he says he doesn't take part and when he does he says it is stupid but staff tell me he has a great time and helps others. I can't do anymore then I am doing so now I just encourage him and if he complains I tell to do what you want. Sometimes I feel like I am being cruel but it is just constant and the same over and over. I can only do so much. The disease does makes the decision.
DH has been happy in front of the TV for years…or just sitting on the screened porch in good weather. (Old and new houses both had/have screened porches.) He likes company to a certain extent--enjoys chatting with his aides or the SW or nurses--and enjoys sitting at the dinner table every night with the family, although he's totally out of the conversations. He's very deaf, besides the dementia.
I agree and can relate to so much that has been written here.
In the beginning I would worry about hubby not participating in activities too and that he wasn't getting enough to do. But now I will take him out for lunch, run errands, go for a drive, be out for hours and that evening he will call me and say "I thought you were coming in today" poof it's all gone. So now I don't worry and he will do what he wants to do...I know the staff encourages him to join in but you can take a horse to water but you can't make it drink. Another thing I'm letting go of.
Jazzy, my wife is like that. Since I need to move her I hope for her to have more activities of her liking. It turns out that she does participate in activities that I never thought she would like. However, don't mention bingo, she will start screaming how much she hates it, it is the symbol of "old folks" to her.
As to whether encourage a LO participate. In some cases it is finding the right activity (which might work for a limited time). But often they can't participate or don't won't to. I think encouraging in these cases doesn't help. And we also want to see more participation for our own sakes, that to not encourage it means to give up.
My wife is high cognitive but she can only do 1 or 2 activities a day, she gets tired easily. She watches a fair bit of TV and movies, a solitary activity. She says she is declining due to lack of intellectual activity but I think it is more the progression of her FTD.
For some people they can't take the stimulation of many activities.
It is hard for many of us since our spouses have problems communicating what they want. Either they are non-verbal, or make a list of things they want to do but can't (or won't do if the opportunity is presented), or something else.
But I would not feel guilty if they don't seem interested in anything. Don't think "if I could just find the right activity." It might not be there.
Boy oh boy can I ever relate to this discussion. For a long time, I too worked so hard to try and keep my husband entertained for lack of a better word. It was completely exhausting. Now he is in a facility and sometimes takes part in activities and often not. I work with a dementia consultant and she has helped me realize working so hard to get my husband involved in things is trying to meet my own agenda. She says dementia/alzheimers takes huge energy for the person experiencing it and apathy for activities is a symptom. She suggested letting him take the lead in what he wants to do. It has been such a relief for me to do so, however, like others, I still struggle with guilt. I want to make things better somehow. Unrealistic. I have learned when I visit, his favorite activity is to go to a particular beach. We walk along the sea shore and I buy him an ice cream cone. He seems content and forgets within an hour we did so. At the time, though, he enjoyed it. I am fascinated that now he is getting involved in activities he never did before. His son and I were both blown over when the staff recently told us my husband is attending church in the facility. Attending church?!?! However, he apparently likes the signing. So on we go. Thanks Mim for starting this discussion. So very helpful to read everyone else's comments. This disease is such exhausting work for all of us.