Stay the course, don't loose your resolve on placing her, it is time! Right easy to say isn't it. Well our respite stay did not go so good. I felt good after it had some time with friends and also some alone time did some more research into homes. Lisa on the other hand was scared, anxious, did a lot of crying. When I picked her up first comment was "I don't like you". Took awhile before she calmed down but made it very clear was not going to do that again. Killed me to think of her in there like that and what crept into my brain maybe I should just hold out until she doesn't know where she is?
Picked her up Friday the last couple of days have not been good seems far more out of it and complaining about not been able to walk right. What does it look like when people start to loose the ability to walk? She seems to have fits of tremors and legs seem stiff then it goes away. She is Getting more scared and anxious last Night awake for a couple of hours.
Sil made comment to me on phone yesterday that placing her too soon could cause trauma and her to decline more quickly and what I should do is get somebody in everyday to help shower and her to use washroom and cleanup, she is having problem with this now. This did not sit well with me.
I emailed back and told her it is not the individual tasks that is the problem it is the whole package and having somebody in everyday to take care of one or two things just adds something else to manage and will only creAte some thing else for Lisa to become anxious about. Also said I don't need to feel quilt over placing Lisa and right now cannot worry about her reaction that will be there whenever she is placed. I have to think for both of us and do what is best for her care and my well being.
I had another respite stay set of next month at same place but am going to cancel it would be awful just trying to get her there and thinking of her there scared and anxious. Sil and bil offered to come And spend a week going to take them up on it, see what they say after. We shall see they have offered help before but it does not materialize.
Just don't know how to proceed, if the call came today don't know if I could place her. What would you do?
I really have no advice or opinion on this, as we haven't reached this point yet. I'm having emotional ups & downs just about getting him into a daycare & deciding just last evening that I need to have someone come in at least once a week to help with his showering & shaving. He simply refuses to allow me to do anything for him, but he can't (I can't!) go on this way.
I guess all I could say at this point, it's you who has the 24/7 duty, not the others. You must do what you feel in your gut is the best thing for both of you. I think sometimes by seeing to it that she is getting all the professional care she needs, you ARE taking care of her.
I will add that trying to get Dan into a couple days a week daycare and/or someone to come here for hygiene purposes will cause a HUGE problem between us...I dread that more than anything.
I agree with Min: "it's you who has the 24/7 duty, not the others. You must do what you feel in your gut is the best thing for both of you. I think sometimes by seeing to it that she is getting all the professional care she needs, you ARE taking care of her. " It is very hard, many say it's the hardest thing they've ever had to do. As Bama would say, "Pull up your big girl panties" and do it. It's never going to get better, only worse. Meantime, you have to guard yourself from going under.
I went through this. It's normal for people to offer their opinions. When WE are normal we handle that a lot better. The amount we react to what people say is a barometer of how stressed we are.
My wife didn't like going either. I took her to respite once a week. The first time is usually the worst I was told and it gets better. I did explain to my wife that she had to work with me so that I could keep her at home but I doubt she understood.
My guilt was huge. I wanted someone to talk me out of it. I felt so bad and I still feel bad that I put my wife in a nursing home. But it allowed me to continue and it was inevitable because it was already hard and it was just going to get harder.
What you do with respite isn't essential. Moving forward with the nursing home probably is essential. That depends on how quickly you could get another one if you move out of your place. I don't know how it works where you are.
There is another point. My wife had the right to not like going. She expressed that even though she was legally incompetent and absolutely unable to take care of herself. And that's the point. It's on you. I'm sorry because I know the anguish - but that's true.
You have to man up to the practical realities that you have to stay in charge while you're being mangled in a meat grinder. Try and stay strong. My heart goes out to you.
Rona, Some questions about your sister-in-law: • Is this the same person who you asked to accompany you when you brought Lisa to the respite place but who was too chicken to do it? • What qualifications does she have to assess whether placing an Alzheimer's patient "too soon could cause trauma and her to decline more quickly"? (Has she ever taken take of an AD patient or does she have professional qualifications in the field?) • What is the purpose of her and her husband coming for a week? (Are they going to help with Lisa's care?)
I know most people (maybe everyone) on this site will disagree with me but I never thought much of the idea of respite care because you have to leave your spouse there and not see them for the duration. The way I believe respite works is exactly the opposite of what my goals were when I placed my husband. I wanted to make it clear to him through everything I said and did that (1) I was not abandoning him; and (2) he was not trapped inside the place. For that reason, I visited him frequently when he first went in, took him for walks outside his care unit but within the facility, and after a few days, took him for rides in the car.
In answer to you question about what you should do, I thought you had already decided to place Lisa and your decision was based on the level of care she needed and your inability to provide it at home. Nothing has changed except it seems she has gotten harder to care for. What I would do is to stay with your plan to place her but think carefully about a strategy for how reduce her anxiety when you do that. Maybe you could hire a geriatric care manager to help you with a plan. Most of all, take heart and don't let your sister-in-law drag you down.
P.S. I just read Wolf's comment and want to say that I agree 100% with the last two paragraphs. Remember, unlike your wife, you still have a functioning brain and it is your duty to use it on her behalf.
I never respite because I never saw my wife as able to accept it.
But placement is a different story. Many people find that they waited too long for placement. Once a person reaches beyond a certain point it is much harder for them to adjust to placement. It is also good for the staff to know the person while they still have capacity so they will see the resident as a person.
I think when you do place her you are going to have to give the ALF or NH staff a chance for Lisa to learn to depend on them and not you. This will probably be a tough transition or both of you, but the alternative of you getting worn down caring for her is not a good one. Sometimes we have to choose between bad options.
I am not in your situation yet but for me can't wait. That aside, the comment they loose ground, from what others have said here over the years, that usually is the case. And how she was when you picked her up is also normal reactions especially the first time. It makes sense since they are in a new place, full of confusion with new routines, strangers caring for them, and new surroundings. Often they loose ground but once they adjust, which can take up to 3 months, they often level out or can rebound to where they were when placed. If you want to continue respite, maybe medicine for anxiety before and during will help her. Talk to the doctor about it. Or you can skip the respite and wait until placement. Or maybe pay for someone to come stay a couple days with her while you go somewhere - if finances allow it. I hope you tell SIL you are expecting them to come the next time to give you the week of respite. If they won't, then tell them to keep their opinions to themselves.
The hard, painful facts is: they are dying and we can't let this disease take two of us. My MIL cared for my FIL by herself and refused help. She died of a massive heart attack one day and my FIL lived another 9 years. My husband made me promise not to let it happen to me and I am trying not to.
Thank you everyone it is what I needed to hear, again. Sil is Not so bad I think means well but as we know you just do not understand unless to live it. I am going to cancel the next respite, hopefully sil and bil come and stay for a week beginning of february so I can get away then just take it from there. Have Lisa on list for care, don't know when I will get the call, and if need be can put her in private care while waiting.
I think if they stay with her for a week while you are away, they will have a better grasp on how hard it is to care for her 24/7. Yes...it is your responsibility to do the best thing for her but I know it is also a little easier when you have folks that "get it". After a week with her...I think they might begin to come around. If not, reread Wolf's post above....I agree with him. She is going to lose ground regardless of what you decide. The longer that you attempt to keep her at home when you know in your heart that you can no longer do a good job at it...the more YOU will begin to lose ground. You have to maintain what sanity you have left in order to take the best care of both of you!
Rona, I went through all the emotions you are going through. After 9 years of caring for him, it was getting to be so much for me that I was in a constant state of anxiety, even though I tried very hard to,be patient with him. The most difficult thing for me were the pooping accidents, all over the floor, the wall, etc. he couldn't shower himself so I Began doing it for him. I would get those "looks" too, but eventually he got used to it and let me shower him.
I vacillated between a caregiving service and doing it all myself. I couldn't stand the thought of someone else being here. But I finally did it. It helped immensely. He didn't like it at first, in fact hated the thought of it. I gave him his showers with the aide watching; eventually she did it. He began to look forward to her being with him. She sat and talked with him, dressed him, took him for short walks outside, helped tidy up the house, even washed clothes. But the most important thing was having her here for a few hours so I could get away for awhile, even it it meant sitting at Starbucks drinking coffee and reading my book. I should have done this much sooner. Sure, it was expensive, but not as expensive as a nursing home.
Now, though, he is in that nursing home. It has taken me 15 months to get used to him being there, and it took him a long time before he now considers it "a nice place." I still have my days of feeling guilt, sadness, wanting the old guy I had back, but wanting that is futile. We have been given a job that is very difficult. So many years wasted. For both of us. But I still love him and want him to be happy. I don't think much about my future anymore. My health is such that I can no longer do all the things I thought we would do at retirement. But, we lived a good life. I have terrific kids and grandkids, and I'm grateful for that.