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 It's time 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post It's time
Mom's in the hospital. She has a UTI, yeast infection, pneumonia and we just discovered that she is diabetic. This is it. Not that it, but we don't expect her to come home. It will be transitional care, then SNF while waiting for a bed in the dementia unit. With luck, this will all be in the same facility - one that Medicare rates highly.

My sister and I are taking turns staying with Mom in the hospital. We've been lucky in that the doctor caring for Mom is very good and has some knowledge of LBD. Unfortunately, the graveyard shift on the second night had a less knowledgeable doctor who tried to give Mom Haldol because she was having hallucinations. My sister was there and stopped them - and gave them a pretty big earful. Since then, both of us have been quizzing and educating the staff - at least making sure that they are aware of the drug issues.

(By the way, the hallucinations really aren't that bad. She's had them for many months. They are seldom scary and if they do agitate Mom at all, I need do no more than hold her hand to calm her. Drugs aren't necessary right now.)

Mom has pretty much stopped talking. She still can talk a bit, but won't unless you push. Here in the hospital, she is sleeping most of the time. This may have been going on before, but she does not always recognize me, or my sister. When I talk to her about her own siblings, she can't remember who they are, unless it is a memory from long ago.

I know, rationally, that this is the best course - the TCU, then SNF and DU. But my heart wants to try harder - fix things so that Mom can stay at home. But, with starting wandering last week, then these illnesses this week, I know that Mom needs 24/7 care from people who are awake and paying attention. That would not be me (solo). I tried the 24/7 awake stuff and I'm not 18 anymore. I can't handle it and would end up with Mom or me getting hurt.

We haven't told her that she isn't coming home yet. Any suggestions anyone has for how to break the news would be appreciated. Mom may not be able to find the words to speak, but she does understand more than she appears to.

Thanks, everyone.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Sat Oct 30, 2010 5:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: It's time
Kate, you've been wonderful with your mother's care all this time and I know it's tough to hand over her day-to-day care to others but there is a limit to what you can do in these circumstances. It will be a new set of challenges for you and I'm sure you will also meet those with the same intelligence and perseverance you have already demonstrated in her care. God bless you!! --Pat
PS: Kate, you don't have to tell her she's not coming home. Since she is going into transitional care, let every phase happen without explanation. That's what I would do.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Oct 30, 2010 5:11 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: It's time
"....... my heart wants to try harder - fix things so that Mom can stay at home."

Please don't feel guilty that you cannot keep your mother at home. You are doing what is best for her, Katelu.

I know exactly what you are feeling. My mother (104) passed away on September 19th. Four years ago as our mother began to fail, my sister and I wanted to keep our mother at home but we absolutely could not give her care through the day and also through the nights. No human being can do that.

Our family tried taking turns with her but nobody was getting enough sleep. The person watching mother would fall to sleep and mother would end up in a corner of the room on the floor. It was awful.

I feel for you.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sat Oct 30, 2010 5:47 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: It's time
Kate,
You have done everything you could to care for your Mom and it takes a mighty big person to admit they need more help, you are doing yet again what's best for your Mom, the wandering was probably the beginning of these infections, if it were me I would just take one day at a time and not tell her until you have to cross that bridge, sometimes these things just kind of work out on their own!

I will keep your Mom in my thoughts and Prayers!!

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Irene Selak


Sat Oct 30, 2010 5:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: It's time
Kate,

I agree that you shouldn't address when your mom is going home. I think it's fine to tell her that the plan is that she will be going home but she has to get stronger before that can happen.

Do you see any connection between these medical problems and your mom thinking she's dead? You might ask if a social worker at the hospital can come speak to your mother.

Good for you and your sister for stopping the Haldol!

Robin


Sat Oct 30, 2010 9:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: It's time
Hi Kate - I'm sure this is a very trying time for all of you. These big transitions are not easy for anyone, but like everyone else has said, you don't need to tell her she's not coming home again. And please don't feel guilty - none of us wants our LO to have to live somewhere else but when they require 24/7 care it is a huge burden and often impossible to do.
When my dad was suddenly hospitalized last year I just told him (when he asked about going home) that he needed to work hard in rehab, then we'd see about him going home. Little did any of us know at that time how bad he really was, what was wrong with him, or that he never would walk again. But, even so, I never wanted to let him lose hope, because that was really about all that was keeping him going. And I still try to approach his questions like that - not lying but trying to be upbeat and positive, when I know things will only get worse. Maybe sometimes lying, but whatever will help him the most is what I try to say to him.
Take care of yourself - I know how hard it is to do that, be at the hospital, meet with the drs. and nurses there, and try to work and run a house. It is really hard. Now's the time to ask friends and relatives for help if you haven't already. All the best to you Kate. You're doing a marvelous job. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Oct 30, 2010 11:36 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: It's time
Well, Mom is now in a senior home. She's starting out in Rehab while they assess her needs and look for space in the SNF or dementia unit. We'd first thought that Mom would have to wait a few months for the SNF and up to 2 years for the dementia unit. But it seems that there is an opening in the dementia unit now and they are considering moving Mom to the top of the waiting list, now that they see her condition.

Mom's words are even fewer since the hospital stay. Once in a while she will point to one of us and give us "the look" and say "mad." She's depressed, but I did ask her if she was getting used to it and she said yes. I'd be depressed, too, to go from my own home to a small bed in a small, shared room. If I remember right, the rooms in the dementia unit are bigger and we might be able to bring in her own chair and dresser. Gee, I hope she can get in there quickly. (Feeling guilty again because it looks like the opening is being created by the imminent death of a coworker/friend's mother.)

I hadn't realized how bad it had gotten. I suspected that there were times when Mom wasn't sure who I was. But I'm finding out that, most of the time, she can't remember her own name. She doesn't remember who Don (my dad) was and she can go through an entire family photo album without recognizing anyone - not even her own childhood pictures. I find myself hoping that, in view of her condition, the whole thing progresses quickly to a point at which she is unaware of where she is or her illness, hopefully bringing her some peace.

Yesterday, I had a workday that was productive and I didn't get preoccupied with worry about Mom. First time in two years or more. My office has been incredibly understanding and I'm grateful for the return of my ability to concentrate when I need to. It felt good!

Part of me thinks I should be unhappy because Mom is unhappy. And I am - a bit. But the relief of being able to concentrate on aspects of my life is almost overwhelming. (And being who I am, of course I feel guilty about that - but still excited and pleased.)

The support you all have given me has been such a huge help. I'm not good at "one day at a time." But I'm trying. And when Mom indicated that she wanted to know what was going to happen to her, long term, I told her that we needed to take one day at a time and it seemed to comfort her.

Thank you, everyone, for your help. What would I do without you?

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Nov 05, 2010 5:32 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: It's time
Kate, you seem to be handling things very well. And you do have a right to be happy, even if your mother isn't. Was she always happy at home? Probably not. It's the very nature of the disease, I think, to want to be somewhere else, not being sure where you are.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Nov 05, 2010 9:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: It's time
Kate,
I am sure it is a sad time for you but I am sure your Mom never indended for you to care for her long term and she would want you to have a life of your own, that's the way it is supposed to be.

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Irene Selak


Fri Nov 05, 2010 1:51 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 716
Location: LA
Post Re: It's time
Kate, I am proud of you and I hope when my time comes my children will be able to care for me as you are doing. This is the way it should be. My greatest joy at this time is knowing my off-spring are leading full and productive lives. So no guilt, okay! Go about your business and give her your smile when you can. Sure she may be cranky but she would be cranky under her own roof. Please keep close watch of her [I'm sure you will] but accept help from others. Best of everything.

Dorthea

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"See this lady, she's 85, but she's nice"


Fri Nov 05, 2010 2:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: It's time
Hi Kate - I am glad that your mom is in a good facility and that you are able to get some of your life back. I don't think any of our parents would want us to suffer and feel guilty, and yet, that is what so many caregivers do. You do have a right to a peaceful life, and it's a matter of trying to find balance with your mom's needs as well as yours, which are just as important. Take care of yourself and I hope all goes as well as can be when your parent has to move to a LTC facility. Hugs, Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Nov 06, 2010 12:17 pm
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