My DW gave me a letter this morning, she put her thoughts down about the future. She is very aware of her limitations and has put in writing her thoughts about the future and our relationship. She has told me, that I need to make decision that are in my best interest and not hers. She is telling to put her in a NH, and to move on. She does not want to be a burden. She says to do what ever I need to do for myself.
I think this letter shows how much she loves me and is the definition of love when you are willing to make choices that benefit the other at your expense is true love. I told her that I have no intention of putting her into a NH and if that ever did happen it would be the last resort. She knows that I have no support from family in this task and she does not want me to carry this burden alone.
I have mixed feeling about the letter. It makes me sad that she knows that I am struggling with the changes and I feel glad that she loves me enough to say these things.
Moorsb, Kathryn has days when her mind is working a little better and on these days she is always apologizing to me for being such a burden. I tell her she isn’t a burden, she is the love of my life, and, she will just have to put up with me taking care of her for a lot longer. I agree with you. It reaffirms our spouses love for us. We have had the nursing home talk also in the past and like you I will not put her in one until she reaches a point where I am no longer able to provide the quality of care she needs. Even then I will be there every evening having supper with her until it is over rather she knows it or not. I love Kathryn and know that she would do the same for as I am sure your wife would do for you.
Jim, my husband does the same every day. He is always saying that no one knows what I (me) has to put up with and the burden he is to me. He thanks me everyday, several times a day and tells me how much he loves me. He said when and if the time comes for NH, even if he objects, to go ahead and do it - do whatever is best for me.
All these things show so much love for the spouse, and for that, I am grateful.
You guys are doing a terrific job of caring for your spice. Hugs to you both.
Sandra has said, to me that she was sorry for being a burden to me, but this time she took the time to put it into writing. He had to think about for a long time, I know that she struggles putting togather words into a sentece at times.
Wonderful moorsb, such a letter. Often I envy those of you whose LO's are aware of what they're going through and how much you're doing for them, but often I am just glad Siem doesn't have to carry the burden of understanding.
Moorsb - what a beautiful expression of love. Cherish that letter. My DH and I have not had the NH discussion. I'm not sure he's aware of his condition. He is very confused as to where he is. I keep telling him he's in his own home. I try to maintain the same daily routines to limit the confusion. But Saturday morning, when he woke up, he again asked what apartment we were in. I told him again he was in his own home. Then I asked him if he knew who I was. His answer knocked me off my feet. "Sure, you're my loving sister." Wow, that was a first. Well I won't ask that question again.
This thing seems to be accelerating very quickly. I wonder how long it will be before I have to face the prospect of an AF or a NH.
Right now, I don't want to think about it ... just take one day at a time ... and hope to get through the holidays.
Sandra is in the mid stages 3 - 4. She has good days and I think yesterday was one. I would like it more if she was not aware of her changes. She has been crying more. This disease SUCKS!!!!!
moorsb, yes it does!!! Your story makes me cry and, at the same time it brings warmth for the loving relationship you and Sandra share! ((((((((((((((hugs))))))))))))))) Susan
Oh wow, tears are flowing, Jim made the decision for himself. I couldn't stop him. He is much happier in the NH where it is quieter and he can rest. Here at home there was always chatter, noise, distractions, etc. He was always worried about me etc. He asked his vistiting nurse to make the referral when he was feeling depressed and sucidal and then while inpatient requested a NH assessment and was eventually placed, as you all know. I miss him terribly on the days I can't get there, but take some comfort in knowing that he is happier there and is very well cared for. The hour long drive is tough, but bringing the puppy helps. I see him every other day and we enjoy it alot. I guess if he is happy, who am I to complain??? Not how I expected things to go, I wanted him home, I expected him to stay home, but then what has gone as we've expected????
Moorsb: What a beautiful letter. Thank you for sharing it with the rest of us. My DW has yelled at me a time or two to 'just put me someplace', but, she doesn't know what that means. At least, I don't think she does. And when that crises is over, she doesn't remember saying it.
Out two children were here over the weekend tho, and they think that I don't know how bad their Mother is and that I can't take care of her very much longer. I hate to admit it, but, they might be right. Others have written here about how to know when to place a LO, but, it isn't something that I even want to think about.
My DW has progressed to the point tho, where she doesn't read anymore or watch tv. We can't go to a movie because she can't understand the story line and her attention span is very short. Then, when that happens, she can't sit still and we have to leave. So, I have just quit going.
I sometimes think that I don't know what the future hold, but, I know that I do and I just don't want to face it.
dean-- You said your children think you don't know how bad your DW is and that you can't take care of her much longer. Also, that you are aware of what the futre holds but don't want to face it.
I don't know your precise circumstances, but a way to start handling both issues, might be to get some in-home help. Your DW can start getting used to having helpers around. The work load on you would be reduced. You could have some respite time--to go to a show, or other activities. This would be a win all 'round. Check with your Area Ageing Agency and find out what services are available. You my qualify for some srvices, and they'll have listings of the service agencies to refer you to. We know where this disease is taking our LO, just not how fast, and not exactly how it's going to show itself on the way. I think the best thing we can do for our Los and ourselves is to steal it's power every chance we can. When we arrange in-home help; personal care attendants; respite help, and even placement--we take away it's power to run rampant, destroying us. The disease may take our LO, but it cannot destroy us unless we let it, or even help it by not using every tool we have to get our Los through and survive as well.
carosi: Thank you for sharing that information with me. We sent to our neuro dr today and he told me the same thing. But, you said it first so that must mean that you are pretty perceptive.
Dean, I do hope you will get help. The people who help you may also eventually be able to advise whether she needs even more care. We are not there yet, but are visiting a facility tomorrow where I am hoping DH may be able to go for two days a week. The reason is not so much that I can't take care of him. (I can, although he's been away with a friend this afternoon and it's HEAVENLY) The reason is that he is so bored all day long, especially in bad weather, and it is getting more and more difficult to find any way to keep him occupied. When we are with other people this is not such a problem, he seems to enjoy himself. So I'm hoping that he will enjoy the day care group.