Some of you have spoken about total exhaustion after the death of your partner and I now understand some of what you are going through. For the last month or so I was unable to function without tears and was concerned that I was becoming depressed. Kevan was a driving me into the ground with his unreasonable, all about him, all about his demands and needs. He even spoke " again" about suicide by Dr. I couldn't understand why the residence wasn't calling me about it. This severe change so I called them. Boy did I get an ear full. According to them no signs of depression, happiest table in dining room, sings, often able to bring severely upset resident around when staff can't. Always bubbly and happy. Always talks to nurse when upset. Doesn't sleep all day. Takes part in most activities and encourages others to do so as well. Memory getting worst but that is it. Paces all the time always complaining of small illnesses. His Doctor called me again and asked me what he says to me so I told her the whole story and they are " again" concerned that he is trying to drive me into the residence as well. I have taken sick days" dementia fiblet" and cut off visits and allowing only email good mornings and good night for the last week. Now it is only evening call for goodnight. They don't want me to share any info about work to be done around my home and no more coming with our son to fix things. I will just be taking him out twice a week for coffee but not to my place. I went through this before and allowed myself to let it happen again. After I cut off the visits and calls I realized I was so exhausted again. I had no energy and just sat or slept for the last week. It was all I could do to feed my little buddy or play with him. It's been over a week and I am now dreading getting back to taking him out. I don't know why he is so different with me. We always had such a good relationship through our marriage so why this? I find it hard to put my foot down and refuse him anything so he just bosses me around. Now I can't let this happen again but not sure how to go about changing me. They said they are worried about me so I have to find someway to fix this now. I'm still so tired I know it's not anything like the rest of you have been through with the death if your loved one but it sure feels terrible. When he went into LTC I never expected this Jekyll and Hyde person. Is this dementia or what?? Now I am "sweat heart, honey, darling" Does he really not know what he is doing. He says he is never mean to me and I know he can't remember the bad things he does and says. No point talking to him about his behaviour.
Jazzy, I think you should stop taking Kevan out. It distresses you. It really makes no difference for him. You cannot change his behavior, but you do have control over your own behavior. You have been there 100% for Kevan, and choosing now to keep yourself together so you can handle the duration of this is something you can do for him whether he knows it or not. You have to draw on your own inner strength. You can do this. Our spouses change, and we have to change also.
It sounds to me like he has two realities. In LTC facility he has found a role that works for him, and is fitting his needs at present. When he is with you he perceives he has lost the role of provider/helper he has always had and he perceives that you appear not to be fulfilling your role.
When I was taking care of my mother I would say, “If you win this battle, you will lose the war. And I meant it. Not that at that stage she understood it.
Can you continue your dementia fiblets? (In this case it really sounds like it is far from a fiblet.) Tell him your “doctor has said you need zero stress in order to recover. This visit, or this call, or this outing is stressing me. As much as I love you, I have to take care of myself first. This visit, call or outing is over”. Repeat it and follow through. Stop taking him out if it seems that it is his goal to destroy you.
I know each situation is different, and advice I receive regarding my partner, I take some of it, and for some I say, nope that won’t work here. But I want you to know I feel for you and will carry you in my thoughts and prayers. And my prayer is for your strength to find out what you need. It sounds like his needs are being met in LTC.
Dear Jazzy, yes all of this is dementia. Our husbands have, or rather now mine had, the same type of dementia.
Your story could be mine. Back and forth, up and down, driving yourself crazy. I lost my life to my husband's dementia years ago and like so many others practically existed on fumes for years. There is a dreadful exhaustion following our spouse's death for some of us. And for many of us, there is a bone jarring exhaustion for years and years.
There are reasons why caregivers often die first. We get fully worn out and our dear bodies can't handle it anymore so we get sick, sometimes fatally.
I agree with CarolVT and Lindylou. I also used to take my husband out thinking it was good for him. I finally stopped and simply visited him in the facility. He was better for it as going out caused anxiety for him and certainly stress for me.
It is so hard to accept all the changes isn't it. Loss, after loss, after loss. Kevan, as is inherent in his disease, will present as completely different people. My husband's behaviors changed like flipping a light switch. Staff told a completely different story than what my husband told me too. They save their worst for us I think.
Anyway, none of this might be helpful. Just know I am so with you as I read the progression of Kevan's disease and the impact on you. As one specialist said to me, "Please can you allow us to look after your husband and you look after yourself." That is my hope for you. Mind you in the midst of the disease I didn't know what looking after myself looked like as I was so exhausted for so many years.
My last comment, indeed there is no point talking to him about any of his behaviours. Take good care of you.
Jazzy, I agree with Carol = stop taking him out for even coffee. If need be, have the doctor write an order to that effect. You can buy the coffee to bring to him. Also, do not feel guilty if you don't go every day. You have to be #1 where this is concerned.
You are right - you put a stop to his manipulating him then get sucked back in. He is a being a spoiled child that knows how to manipulate you into getting his way. He knows somewhere deep inside that if he gives you this 'poor me' story you will cave in. He doesn't care what it does to you - he is past that, not the Kevan you were married to.
When tempted to go give in to him - come here and we will remind you. We will remind you that he tells you one story and his reality at the LTC is totally different.
Our son and his wife came today. Son put up a door for me then they went and took Dad out to thus favourite Chinese buffet. After they left he called me and complained that they didn't give him a choice and just took him where they wanted to go. I called them and they said he had a great time and said HE loved it there. He laughed and joked and had a great time. Now I can see it, how it is for me now. What a life.
Jazzy, I totally agree with others posts. As soon as I read your note, I thought she needs to stop taking him out. What other people do is their business. You may even need to limit or stop taking his phone calls. Whatever you need to do to take care of yourself and make things easier for YOU is what you need to do. Only you can answer that question. I know I took my husband out every week for a while, brought him home, fed him lunch, got a movie that he liked. He loved it but then one day I thought this is getting to be too much because he could never remember when I did take him out and always asked me where have you been? That was the kicker for me. We do these things because it makes us feel better. With a dementia patient, I honestly do not think it bothers them that much because their needs are taken care of. It is our needs that are not being taken care of. God bless.
When my wife was nearby I would see her a lot. Between visits, many having to do with emergencies, some real, some imagined, and the many phone calls, I didn't get to spend the time with my son that I planned. When she moved away vista became once a week. It was easier for me because the facility wa much better and saw how her previous freedom worked against her and how my interventions made it harder for her to adjust.
And I remember the complaints. And staff told me that she was the most active and involved resident. Her complaints didn't match her activities. This is quit common.
Outside trips stopped after she fractured her ankle at a park with me. Her falling is a great danger and the outings were very stressful for me.
The family have now stepped in and he will be told today that new rules for his outings are now in place. His Sunday outing with our son caused these changes as the floor nurse and staff had no idea he was not in the building. I was furious. The director of care took the lead and I called the family. He usually meets us outside after he has signed out but now he is forgetting to do that. Now we will stop out side, he will wait inside, we will go to reception and tell them we are taking him out and for how long. I will already have called the RPN to inform her that he is going and she will have made sure he is signed out. Our daughter is meeting with us and she will be explaining all the new rules to him making sure he knows this is a family decision which will hopefully take the load off me. She is going to make sure it has to do with their concern for his safety because of the staff not doing their job on Sunday not taking away his independence. I sure hope he understands. Everyone is now noticing his memory loss is getting worse. We now need to work on getting him a volunteer to take him to the park twice a week. He refuses that.
Jazzy, I don't think you are hearing what your friends here are saying about the need for Kevan to have outside jaunts. To some of us, it sounds as if the time for that has passed. It seems you don't agree, but have you considered why we react that way? Kevan is not and cannot be "independent". Maybe that noun just needs to disappear into the fuzzy background. Maybe everyone is happier if the possibility exists, is not extinguished, but just never seems to happen.
There is a human rights law here in Canada in all our Provinces that says he has rights to come and go until such time as a Doctor decides that he is unable to go on his own. The residence staff and i do not have that ability right now, but we are taking what ever actions allowed to keep him safe. Family and staff are only human and mistakes do happen so we make changes as soon as we can. I do not agree with these laws but they have been put in place to protect people like Kevan from being abused or taken advantage of. I come here to vent as well as to get advise but if some of you feel I am not taking your advise and you feel so strongly about it, then I will stop sharing.
Jazzy, I apologize for making you feel that way. I did not think I had said that Kevan had to be confined and had no right to leave. I apologize for hurting your feelings and you certainly should not stop sharing because of anything one person said.
Oh Jazzy - just continue venting here. This website is just what we all need. I a going to rephrase my last lines in this thread:
Each situation is different, and advice received regarding partner or spouse, take some of it, and for some of it, say nope that won’t work here. But know we feel for you and will carry you in our thoughts and prayers. And our prayer is for your strength to find out what you need and then have those needs met.
Jazzy, do continue venting. People are showing some concern.
The laws are the same in the US for the most part. My wife's ALF would not accept her unless two doctors agreed that she was incompetent to make financial and medical decisions. Otherwise she could have walked out any time she wished.