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Decisions not Regrets


arogers

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I'm not sure why it's easier for me to blog when things are great. Maybe it's because I want to share the good times but feel more secure holding the not so good things in so you don't see the real me. It's easier that way.

 

I can't deny that this has probably been the most difficult week we have had since any of Bill's strokes. Of course we have dealt with the challenges of the vascular dementia for about a year in a real serious way. A year ago Bill was hospitalized with anemia and at that time he was prescribed Namenda which has worked very well with managing his dementia and cognitive issues. Even though I was told this wasn't a permanent fix, and Bill's overall condition is probably much better than it "should" be that does not mean I haven't doubted the neurologist has known what he was talking about. It seemed to me from the very onset that Bill's neurologist was too pessimistic.

 

We have had a great year.It hasn't been an easy year. BUT, Bill hasn't spent hours every week at one doctor or another. Everything has been going really well. Then - wham-mo - last Thursday everything changed. I still don't know why. I probably never will. It has been a real roller coaster of a week. The one thing that is different though is Bill's resignment to the SNF/Rehab Facility. He hasn't asked one time when he will be coming home. He is perfectly content. That just isn't the way he has been. He isn't asking to go out. He isn't telling me he's going nuts being there. It's all too strange for words.

 

You know there isn't much exciting to write about when life presents these challenges. I can tell you that I know Who is in control and it isn't me. I am learning that I may not be Bill's hand's on caregiver right now, but that doesn't mean I am not care-giving. It has been my advice to others to understand our own limitations. I've said to many others that THEY need to realize where their loved one would be should they no longer be able to care for them. And now, I've spent this week doing a lot of self-talk about this very thing.

 

And so, I will listen to my own advice to others and I will allow others to care for my beloved for as long as is necessary. I will release my caregiver role and will take back my role as wife. I will support Bill, I will advocate for Bill, I will cheer Bill on - and I will allow others to help him to get stronger if that is possible. I won't look 30 days into the future, or 60 days into the future and I won't make decisions based on what others may say or wish - unless those people are in a place where they can do their part in care-giving - not in just going to visit for 1/2 hour every other day.

 

 

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Your postings and blog always make me remember your words by your signature..."Just For Today" Actually, those words always pop in my head now when I am feeling out of sorts. Thanks for that motto of so little words but with plenty of meaning.

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I am glad you are peace with your decision. I know the time will come when I will have to do the same, but for now we continue to take things one day at a time.

 

I hope you are able to take some time for yourself and relax a little - you've earned it!!

 

Sarah

 

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Ann:

 

Thanks for updating all of us, I know things must be hard for you right now, but your wisdom and attitude is helping you out, we all know Bill couldn't have asked for better caregiver or wife than you.

 

I also learnt meaning of one day at a time and do your best for that day.

 

Asha

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Oh Ann, this is so very difficult for me. (I had just sent you a message before I read this.........) anyway, I am a bit confused. Is this definitely Bill's new home or will his condition be tweeked and reverse the situation?

 

Your stance, of course, took much thought; and it has been pointed out "just for today" is the situation. It certainly is hard to understand how this has happened and Bill's new "attitude". Perhaps that is part of whatever happened, but I know that what you do will be the best for him.

 

Do not forget us and do keep us informed. After all, we are all family.

 

Phyllis

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Guest lwisman

Posted

Ann,

 

Thank you for writing this blog. I am sure it was not easy for you.

 

I commend you for facing the situation and seeing the reality. Too many try to deny reality. Each of us must deal with shifting circumstances. It is not good or bad, it just is.

 

Remember you have lot of friends on this network. Sending positive thought in your direction.

 

Good luck to both you and Bill.

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Ann,

 

(((HUGS))) and prayers to you and Bill. None of us know what tomorrow shall bring - whether we're survivors, caregivers, or even a daughter of a survivor. The "hands-on" caregiving for Bill is being performed by the staff. But, as you know, caregiving also includes the decision-making and the "behind the scene " orchestrating that you are doing at this point for Bill.

 

All is in His hands. I sincerely pray that it is His wishes for Bill to recuperate and be once again at your side. I also pray for your continued strength as you face the road ahead.

 

Please keep us posted on how you both are doing.

 

(((hugs))) again.

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Oh Ann, this is so very difficult for me. (I had just sent you a message before I read this.........) anyway, I am a bit confused. Is this definitely Bill's new home or will his condition be tweeked and reverse the situation?

 

Your stance, of course, took much thought; and it has been pointed out "just for today" is the situation. It certainly is hard to understand how this has happened and Bill's new "attitude". Perhaps that is part of whatever happened, but I know that what you do will be the best for him.

 

Do not forget us and do keep us informed. After all, we are all family.

 

Phyllis

 

Phillis,

 

Of course, I always think that maybe he will be home. Vascular dementia though, unlike stroke, is not a reversible condition. We are really in a holding pattern as far as when and if Bill will be at home. Iknow that since he is in the nursing care facility I will be able to take him out an that is a good thing. We will just take it a day at a time!

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Ann hugs to you and Bill, Just for Today.. I think of your wisdom and good heart. and Care Giving ... the word would take pages to describe, it is not just hands on, as others said, it is a multitude.. and much of it "mental" doing the best you can do at the time it is happening. Trying to see some light when it seems very dark.Knowing what to say to others, and logic .. sometimes is hard to hang onto when you are in the situation.I have been a caregiver twice, and now the survivor... Wishing you strength and sending you both warm thoughts and prayers and loads of hugs.. We are all here for you..

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Ann,

 

Having helped Don for many years oversee his mother's care in a nursing facility when she had dementia, I know that just because Bill's location has changed your level of involvement, worry and caring will not change all that much. You'll just have more opportunities to care for yourself along the way to whatever happens in the future.

 

I, too, am glad you are at peace with your decision to let others do the day-to-day custodial care. Many people never get over the self-inflicted guilt of having to make such a difficult transition or it takes them a long time to forgive themselves for their very human limitations. You love Bill and that shows through with everything you do and have done for him. There is a time and place for everything and the wise person knows when the time and place is right.

 

Jean

 

 

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Ann--I am so sorry for the time you are going through. It is not a very easy time for you. I took care of both my parents. My Mother had Alzheimer's and my Dad had Micro-Vascular Dementia.

 

As a caregiver, you become strong so you can take care of all kinds of situations. The worst times for me were when one of my parents regressed in their behavior while the disease made its deadly progression. It threw me into a hurricane and left me at sea.

 

But then you adjust to the new level of the disease and things go merrily along until the next hurricane throws you out to sea.

 

You are doing the best you can for Bill. You are his strongest supporter; you are his best advocate and you make the best decisions you can at the moment, with the information you have at hand at that time. You make your decisions out of love and no one can ask for anything better than that in a caregiver.

 

I will hope that Bill will come back but if he has to stay in the facility, I will pray for your strength to hold you up. Take Care. LK

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Dear Ann,

 

I wish to offer words that can hopefully help you and Bill. My wife and I are in similar circumstances as you are. It was necessary for me to allow her to go to a SNF once again because her needs exceeded my abilities. Admitting our inabilities is very hard for most folks. Even though someone else is now doing the hands on care does not make us less of a caregiver. It actually allows us to look at the broader picture I think. Making the decisions for our loved one that they cannot for themselves is tough enough in life but you seem to be capable from what I've read in your blogs. As others have said here know that you and Bill are in the prayers.

Good luck to you both.

 

John

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Thank you all for your replies and messages of encouragement. I'm really going through so much denial right now. Actually, I think I'm going through the stages of grief I refused to allow myself during the time of home caregiving.

 

I find myself doing that wich I know others have faced. I've been thinking I will go to see Bill and the "old Bill" will be there. It is easy for me to fall into the guilt trap when he says, "where have you been?" - when I've been out of the room for 15 minutes. Trey and Bill's mom are reacting in a much more obvious way. Yesterday Trey said he thought his dad was "REALLY good". Of course, I interanlize that statement and dwell on it and the guilt comes over me. "What is going on with me that I am so weak?" "Am I imagining all this?" "I must not be able to see what others see."

 

Then I review the day. The speech pathologist came in to evaluate him. She was wonderful. She asked him a few questions. One of them was how he would make a peanut butter and jelly sandwich. He got to the bread - then said he would get a leaf of bread - and that was it. Whammo - now it was visible to somebody else. Then the reality from the speech pathologist - I don't know if we can make any improvements. We won't know until we try.

 

accept...change...know the difference in the two. That seems like a bigger challenge for me everyday.

 

 

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ann, i agree with others have said. this decision you made was the right one for now anyway. i used to work in snf's and that is why they are there to help families with caregiving and therapies. a respite break for you so bill can continue to get the care he needs right now. its never an easy decision to make just a realistic one. i will keep you both in my prayers, that bill gets stronger to come home again.

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