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 Admittance to nursing home facility 
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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
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Anne,

So sad to read your post. Please accept my condolences .

Take care.

Karen


Mon Dec 14, 2009 10:18 pm
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
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What a blessing to have found such a wonderful home. I hope to be able to do that for my LO someday. I rejoice in knowing he knew where he would spend his tomorrows and someday you will be there in his arms again. I'm so sorry for the loss of this precious gift from God and pray God carries you thru these ever hard times.
Sincerely and with deepest sympathies,
Lori


Tue Dec 15, 2009 12:58 am
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Anne So sorry for your loss. Many prayers for all who have lost loved ones this year. It's been a tough one.
Judy


Tue Dec 15, 2009 9:56 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Anne,
Please except my deepest condolences on the passing of your husband, take comfort in the fact that he no longer suffers LBD and is free. Take care of yourself.

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Irene Selak


Fri Dec 18, 2009 11:29 pm
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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Anne: My deepest condolences on the loss of your loved one. Now the second phase of the grieving begins. Be well & take good care of yourself. Dee


Sat Dec 19, 2009 3:52 pm
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Joined: Wed Aug 27, 2008 11:18 pm
Posts: 27
Location: Sonoma, Ca
Post Struggling with placement decisions and emotions
Not sure whether this is the correct forum for this subject or not, but needed to weigh in after reading recent comments.
I am almost there - accepting that I can no longer care for my husband at home. And, that is not because he has lost those wonderful cognitive moments, but because of mobility issues. He is 6'2" and just under 200 pds. His Lewys are interfering more and more with his lower body strength and it is a constant struggle to get him from Pt. A to B, to get him out of bed, into a chair, etc. Have tried canes, walkers, wheelchairs (a gait belt always). He is 83 and I am 73. My body is wearing out very fast, along with my emotional status. It is often also too much for in-home caregivers and I often have to assist them!
Placement is the most difficult decision one can make I know. My caregiver counselor (and his children) have told me that I have to 'let go' of thinking that I have not done enough for him. My spouse often tells me that I'm doing too much, but then says that I'm the only one he wants to care of him...how do I deal with those comments? In my heart, I know that he will not survive long in a care facility (I am only exploring RCF's-residental care facilities- at this point).
Most of the people on this forum seem to be taking care of their LOs at home and I admire them so much. But, I seem to be falling apart quickly and have never been that kind of person. I'd love to hear from others who faced this decision and how they are dealing with it...especially placing spouses.
Thanks for listening.
Jackie

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Jackie

"Try to be a rainbow in someone's cloud."


Mon Apr 19, 2010 1:43 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Jackie,
Please send me an email. Another local SG member just placed her husband in a care facility, after being told by his sisters that he wouldn't make it in a care facility. I'm sure she'd be happy to talk with you, just as several others talked with her.
Robin


Mon Apr 19, 2010 2:01 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Jackie,
I can't really tell you so much about placement as I did not place my husband because I had this notion I could better care for him and he would live longer , no one knows those answers but I can tell you the facts about keeping them home with little help, it takes its toll on your body, it has been 5 yrs since my husband passed I have all sorts of bone issues with my back, hips and wrists and it was from the yrs of lifting that I did, I am not saying I wouldn't do it again and I am thankful that my health more or less held out while he was alive but I know I am in constant discomfort.

I think it takes a brave person to admit they can't do it anymore and leave the care to the pros ! Even in Placement your job doesn't end just maybe the physical part of it !

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Irene Selak


Mon Apr 19, 2010 2:07 pm
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Joined: Wed Aug 27, 2008 11:18 pm
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Location: Sonoma, Ca
Post Struggling with placement decisions and emotions
Irene: It is really good to hear your comments. I am a retired RN (my spouse an MD) and I, too, had the notion because of my training that I could do this. My wrists and lower back are giving me the most discomfort, along with the pain in my heart. Intellectually, I know that I am no good to my spouse if I break down first, and then placement becomes an emergency issue. Emotionally, it has taken me much longer to take the next step. Thank God for my Redwood Caregiver classes, (and my fellow caregivers) that have helped me think through this decision. And their referral to a truly caring Placement Counselor in this area.
I don't want to be healing myself for the little time I have left in this world. I'd rather spend some quality time with him in a facility as a healthy loving spouse. I also owe it to my son and young grandchildren with whom I have been spending less and less time with.
I recently had a very wise physical therapist tell me that I can survive grief and sadness, but not resentment! Whether one admits it or not, resentment always creeps in and I don't want to reach that point.

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Jackie

"Try to be a rainbow in someone's cloud."


Mon Apr 19, 2010 2:25 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 728
Location: LA
Post Our spouses
Jackie, I hear your anguish in dealing with this matter of placing your loved one for others to care for. You are so right about the human body. It cannot withstand the heavy lifting. Maybe you have read some of my posts and know that I cared for Mr B. up until the end but he was able to help himself to his little bath room until the very end when he went to the hospital for his last week. Home Health put him in a chair for his showers. Yes, he had falls, I called on my son and grandson for help with those. If it happened during the day when my son was at work, our friends from the firehouse came and put him to bed. The last three months I had aid and assistance from VA added to the "help" mix. But I always knew that when the day came if he could not walk to his little bathroom or he needed to be diapered, that would be the day I would place him... our local doctor kept watch and always said that when he was a threat to himself or to me, I would no longer have the decision and he would have Mr B. placed.

I really wanted to speak to the subject of resentment. I'm sure the people who made that observance are quite knowledgeable and perhaps the overall majority feel that... as a personal opinion, I do not feel any resentment. It has been five months since the death of Mr. B. My health is gradually responding to rest and pleasure with my friends and family but none of those can take the place of someone who was at my side for 67 [70] years. My children make a commitment to supporting me when it became obvious that I wanted to care for their dad. They aimed at caring for me. With them as a backup, we were so fortunate that we always had him in his own surroundings.

I feel sad from reading how it is with you and I know you are right with your thoughts... there comes a time when you need to turn part of it over to others... you will need to be extra strong as you do what is best for both of you. I am so sorry. You will still be there for him. Maybe closer.

Having said those things, I know each and every situation is different, but resentment does not necessarily need to be part of the decision. I think if I had not decided to donate his brain tissue to Mayo Clinic and receive a definite diagnosis, I would not be healing as well as I am but with the diagnosis and the knowledge that the tissue is being used for future research in the field of Lewy Body and Alz. I am at peace [if sad].

Let us know how everything goes with you. We understand.

Dorthea

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Mon Apr 19, 2010 3:46 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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I had to place my husband in a dementia care facility for a few months last year. I probably visited too much [daily for several hours a day] and he was far too dependent on me. Since I assumed I would be bringing him home as soon as I got moved, it wasn't a major problem. But if I place him again permanently, I would do as garnetb suggested: Keep the visits brief, perhaps not daily, and allow him to adjust, as well as he can, to the routine, the staff and to the other residents. Do make your visits at various times of the day and evening so you can get a feel for how well he is doing and how well the staff is taking care of him. And, unless he is being neglected, don't be too critical of the staff. Most of the CNAs work very hard for very little money [all the money goes to the top executives, but that's another issue!] and are very good with extremely difficult patients. My husband was much more cooperative with them than he is with me.

Please keep us abreast of the situation! It takes as much courage to place them as it does to care for them at home. And it's probably just as stressful. DON'T FEEL GUILTY!! During the months my husband was in the facility, I didn't feel I had the 'right' to do anything enjoyable because he was 'in there'. Sounds silly, I guess, but some of us are a little silly about these things. Get some sleep, have some fun and know you did what you had to do for the good of both of you! God bless you! :) --Pat
PS: Jackie, I am also an RN and believed I could always take care of him. Now I know my limitations.


Mon Apr 19, 2010 4:50 pm
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Joined: Wed Aug 27, 2008 11:18 pm
Posts: 27
Location: Sonoma, Ca
Post Struggling with placement decisions and emotions
Dorothea:
Yes, each LBD person is very different. My spouse needs personal assistance with everything - bathroom, shower, dressing. The visual-spatial symptoms seem especially bad for him. He cannot judge the distance to sit down in a chair or on the toilet or over a small threshold, etc. He is this big gentle giant who has lost control of most everything, and he hates it.
I have read many of your posts and the most joy we get are joining in his wonderful hallucinations...great plays and pageants play out on his horizon. And he does make us laugh on occasion. Sometimes I have difficulty digging into my 'gratitude' sack.
Let me just clarify the 'resentment' comment. I didn't mean resentment over placing him should that time come. It is that resentment that creeps in beforehand over the enormous caregiving burden...forgetting that it is not his fault. I'm taking my 2nd Anger and Frustration caregiver class because I 'flunked' the first one! This one is going much better and helping me to stave off those feelings. This roller coaster journey (per ManyMoons poem) is never in neutral. Finding equanimity is difficult.
Thanks for your encouraging support and comments.

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Jackie

"Try to be a rainbow in someone's cloud."


Mon Apr 19, 2010 5:12 pm
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Joined: Sat Dec 05, 2009 7:24 pm
Posts: 34
Location: Northern Minnesota
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Back on December 11, I wrote that I hoped I could care for my husband at home for at least another year. That was not to be as he fell and broke his hip on December 28th. After surgery, he was in the hospital a week and then transfered to a swing bed in our local hospital, nursing home, he went into the nursing home on the 14th of January. Every day he asks me to take him home,I would take him home if I could handle him.

When he went into the hospital the night he broke his hip, the nurse told me that maybe I should look at it as a blessing in disguise that I would not have to make the decision to place him in a nursing home. I have come to the conclusion that she was right, I would be feeling so guilty if it had been my decision to place him due to the Lewy Body. As it is now I can tell him, no you can't go home until you can walk, and where he doesn't like that answer, he is somewhat accepting of it. I don't have to feel guilty about placing him, there simply was no choice.

Mary 73


Tue Apr 20, 2010 12:00 am
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Joined: Sat Mar 28, 2009 6:01 pm
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Jackie,

I am in a situation very similar to yours, trying to care for my husband who is 5' 10" and once weighed 170 lbs.. I am 76 years old, not quite 5' and weigh 115 lbs, plus I have scoliosis. My husband doesn't walk, is incontinent, and needs help eating the pureed foods I prepare. I cannot get him up out of bed and dressed, nor can I undress and place him in bed. I can barely transfer him from his wheelchair to the recliner where he spends most afternoons. The only way I am able to manage is with help. Living with us during this school year has been a student training to be an OT; in exchange for his room and board, he gets Philip up every morning, and into bed at night; he changes the catheter Philip wears at all times, and assists with cleaning up the bowel movements. When he is away during the day at school, I have another helper 5 mornings a week who keeps Philip safe, reads to him, prepares and feeds him lunch, and settles him into his recliner for the afternoon. So I have been able to keep him at home.

He is now in a hospice program as he has been in declining health due to dysphagia and a series of UTIs which have affected his kidneys. He is losing weight slowly and steadily. The hospice program comes with an aide two mornings a week. She bathes him or manages to get him into a tub for a shower as she is a large, strong person.

My problem is that the school year is coming to an end, and I will have to find someone else who can manage my husband. I have been thinking about hiring a live-in caretaker who could replace my two helpers, and also do some of the other work I still am doing (laundry and cooking, not to mention the general housework and garden upkeep). I know it will be expensive, but so is a RCF or nursing home. My family have been urging me for almost a year to consider placement. I know my health has suffered somewhat and will continue to decline as I both care for and grieve over my dear, dear husband. But I do not want to give up the special times we still have, especially every night, when we hug each other, and try to calm and comfort one another. That helps both of us, now sleeping separately, he downstairs, and me upstairs in our bedroom, sleep soundly enough to get up to face another day.

Perhaps having a live-in caretaker is something you could also consider if it means so much to you to have your husband at home. We each have to find the solution that feels right for us, both physically and emotionally.

Doris

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Tue Apr 20, 2010 1:01 am
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Some of the questions I considered about my dad before he moved to ALF were:
What is in his short term best interest?
What is in his long term best interest?
What is the financial situation? How long will his resources last given the expense of each alternative, and how will we get the most bang for the buck?
Could he be cared for at home with the level of care he needs and how many caregivers would it take?
What is in the best interest of my own health?
If my health deteriorates more from the physical and mental stress of caregiving, who will take care of me?
Who will take care of the other people who depend on me?
Is it fair to my family if I put the amount of energy into caring for my dad that he requires?
How can I balance my life so my dad is well cared for at the least expense to my health and well being?
There are very complex and sometimes painful answers to these questions, but they were important for me to discuss with myself, my husband and kids, and my sister (and my counselor at the memory center!). Lynn


Tue Apr 20, 2010 2:29 pm
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