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 feeling overwhelmed 
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Joined: Fri Apr 03, 2009 9:55 am
Posts: 61
Post feeling overwhelmed
I just want you all to know how much you help me get thru the day. I don't post much but do read alot and appreiciate all of you.
I am feelling so down and overwhelmed theses days. I read what all you guys do and I don't have it as bad as most of you but can't seem to cope. My 2 sisters and my daughter and I share most of my moms care. We have a caregiver during the day but we take care of nights and weekends. Mom is still staying alone at night but we stay until she goes to bed. I feel like this is not safe for her and worry about her but we are all at our wits ends. We all work full time and I still have 2 kids at home. They are grown but still there for them. I feel like I don't have a life besides mom anymore. I want to do all I can but latley it's getting hard.
We can't get mom to go anywhere, she hardly talks anymore. I'll bring her to my house for dinner and right after she wants to go home. We just go sit and stare at each other. Can't get her to walk outside, read to her or watch TV. Everynight I have to explain why I'm staying with her. She tells me go home and realx. I'm also working a part time job on weekends to help with costs.
We have found another girl that we can hire to help out more but I tend to feel guilty not doing it myself. I feel like it is my job. My mother has been such a wonderful person her entire life and she doesn't deserve this terrible disease (who does?) I just wish we could get her to go out more and enjoy something.
Question, she has been wetting the bed everynight for a couple weeks now. the doctor gave her Detrol LA but it hasn't helped at all. Is this just part of it? It really bothers her. She is embarassed.
Thank you for listening and hope I didn't ramble too much
Diana


Fri Sep 11, 2009 2:25 pm
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Diana,

You deserve to ramble as much as you want and need to!

For what it's worth, my brother and I kept my mother in independent living probably longer than we should have by doing the kinds of things you are. We'd go in the morning and get her up, dressed and fed, then take her to day care; in the afternoon one of us or a paid care giver would pick her up from day care, get her dinner and stay with her until bedtime. Then on weekends, we were with her from first thing to last thing. Every morning she told me some story about how she has slept in the attic or basement or the house across the street or the other apartment that looked just like the one she was in. And she was actually afraid being alone, though she didn't want to move, didn't want to be bother and so on. Sometimes when she was confused, she'd call in the middle of the night thinking it was day. Don't know why, but my button on the one-touch dialing was the only one she ever found at 2 a.m. It was exhausting, and I didn't sleep at night for fear she would leave her apartment.

But back to your question: Incontinence is common in LBD, as it is in many other dementias and other illnesses. Whether your mother's case is "simple" incontinence and there's nothing else you can do about it, I don't know. But incontinence briefs for her and pads for the bed are nothing to shy away from. She'll be a lot happier using them than she is with the embarrassment of wetting the bed and having to do all that extra washing.

Garnet


Fri Sep 11, 2009 6:55 pm
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Joined: Fri Apr 03, 2009 9:55 am
Posts: 61
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Garnet,
Wow it does sound like us. I know what you mean about it being exhausting!! We blocked off my moms upstairs and brought her bed down. Now she tells everyone we moved her to a basement. She asked me one day how would you feel if someone just locked you in a basement!! It was heart breaking and funny at the same time. She also has for a long time thought she is not at home. She says we were so clever to find all the same things she had in her old house.

How or when did you decide to move your mom some where else? I know I worry all night too about her going outside.

We did try the depends but she wet right thru them. We also got a matress protector and the pads too. It's so weird because I don't understand how she could go as much as she is. We have an appointment with the doctor tuesday because he wanted to talk to us about it.
Thanks again for listening
Diana


Fri Sep 11, 2009 7:27 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Diana,
Several of us are caring for our mates, that's much different than caring for a parent. With my situation, I'm home and my main concern is caring for Frank, I don't have anyone else that I HAVE to take care of, I also retired early. I think the difficult part is that this is our life, no break, no planning a get away, and it's never going to get better, it will end when Frank is gone and I'm left to start a new life. I'm assuming that I will out live him???? You, Garnet and your families are doing a wonderful job, hang in there.

Gerry


Fri Sep 11, 2009 8:46 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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Diana,

Sounds like everyone might benefit if you placed your mother in a facility.

My father also urinated a huge quantity such that incontinence briefs couldn't contain everything. Have you tried the Extra Dry version of the Tena-brand side-tape briefs? That plus a Super Dry Night Pad (also from Tena) may be sufficient. Otherwise, you could consider a catheter.

Detrol is anticholinergic. There is some debate about whether it's mildly anticholinergic or moderately anticholinergic. Anyway, generally speaking, this type of medication is to be avoided in those with dementia.

Robin


Sat Sep 12, 2009 7:34 am
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Diana,

On the incontinence, did you see this from one of the other discussion threads?

"My Dad has LBD and he was seen at an incontinence clinic (we live in Australia). The nurse told me to make sure I kept up with Dad's glasses of water through the day. She explained it like this-

The making urine mechanism can go haywire in elderly folk, with the mechanism making more urine throughout the night instead of the day. Keeping hydrated with water helps the mechanism to make and release throughout the day...."

You also asked how/when we finally decided to place Mother in a care facility. You should know that we probably made every mistake in the book before we found the right place. I hesitate to confess all this, but....

First we arranged and paid for one locked, highly recommended assisted living facility. Then I spent time alone there taking measurements to see how her furniture would fit and realized there was NO sound-proofing between rooms and the walls were paper thin. I knew that wouldn't work.

Then we tried another assisted living facility that seemed so right. It didn't have space in its dementia wing, and Mother seemed better off mentally than its dementia patients anyway. Mother was so depressed -- the other folks there were physically worse off than she -- that we moved her out after one night.

That was when we started the almost-round-the-clock sitting, which we had to provide to keep her in the independent care setting.

But she was clearly getting worse and I knew we couldn't keep up the schedule forever. So we next tried a respite stay in a dementia facility that we chose because it had different pods for different levels of dementia. It didn't have a private room available so we took a shared space -- in a HUGE room with a divider. The facility told us the roommate was a sweet, high-functioning lady. The plan was to try it out and if it worked, we'd take the first available private room. Apparently, to them, high-functioning meant mobile. The roommate was on the move constantly, including all night, muttering and keeping Mom awake. Mother was such a nervous wreck that she became physically ill with gastritis and vomiting. She was also calling me in the middle of the night (yes, we'd given her a phone) telling me to bring the police because people were being kept against their will. We also saw no interaction between staff and residents (so much for the regular activities we'd been promised) and the food was pitiful.

From there, we brought her to my house. Oh it seemed the perfect solution. She perked up. She seemed with-it enough that I would leave her for an hour or so to get groceries. I worked out of my home at the time so I could just call on paid care-givers or my brother as needed. Then she started downhill again. She didn't know who I was or where she was most of the time. At first it was harmless -- she thought I ran a boarding house, but eventually she thought she was being held captive off and on. I was awake all night listing for her -- was she falling getting out of bed (sometimes yes), did she need help in the bathroom (one night I found her in the bathroom standing with her pants down and wetting the floor; she couldn't remember what to do next), was she trying to escape? In her confusion she was becoming more and more agitated and combative. One night I spent two hours driving her around Raleigh hoping she would think I was bringing her back home in the end, not the place she was being held for sexual purposes.

The week I had to call my brother to come over three times to calm her (I couldn't because I was her captor -- she once told my brother she thought I was mentally disturbed), I said it wasn't working. My brother was actually surprised. Men, I have learned, have an incredible gift for denial.

That was when we found our current dementia facility. We had ruled it out earlier because its AL portion is huge and too confusing, but the dementia wing is small. Overall, it has been excellent, but there have been other trials.

Mother became more confused and turned violent -- she was biting, kicking and scratching staff --- so we had to commit her to a geriatric psych ward for two weeks. This was within three months after moving her in. If that had occurred when she was at my house -- I'm not sure how I could have handled it alone before help could arrive, and we wouldn't have known what steps to take next. Later, she fell and broke her hip, but that's another story.

I tell you all this to reinforce a couple of suggestions:

Go straight to a GOOD dementia facility; don't try assisted living. You'd have to make the move into dementia care eventually anyway.

I think it's better to move into a dementia care facility while your loved one is still able to adjust and socialize a bit. Mother was too close to the edge by the time we made the move. I know every case is different and it might not have prevented the violent outbursts (she was working toward that even at my house and while we were using Seroquel), but other residents who moved in earlier in the disease process seem much more at ease.

It really sounds as if it's none too early to move your mother into a facility, for her sake as well as hers. We started by telling Mother we were just going to try it for a while. Then when she wanted to leave and go home (which she'd also wanted to do from my house), we'd say, "You need to get better first. Then we'll see what to do next."

A year and a half later, she is wheelchair bound and largely beyond speech. I can't even help her to the bathroom on my own now. In fact, most of the care managers have to have assistance because Mom can't help with the transfers.

Independent living or even living at my house could not have worked for long. We got her in just in time -- and later than we should have.

Now, I just ask your forgiveness for rambling. I hope maybe learning of all the wrong turns we took will help you make a better decision from the start.

Garnet


Sat Sep 12, 2009 9:42 am
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Joined: Fri Jan 23, 2009 4:11 pm
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Location: N Calif
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Thankyou, Garnet !!! Your amazing story comes just as I am looking at various care facilities for my husband. I am really torn from one day to the next, when I hear things like that they will "give at least one shower per week" (He is used to having one every day) and "he just needs to ring the call button if he wants to use the bathroom" (he hasn't been able to remember how to do that for several years) I'm just not sure they could be there soon enough to help when they have so many others to help also.
I am sure that the stimulation of their programs would be very good for him however. He really enjoys being around other people if they are happy and helpful. He gets very anxious if he hears anyone crying or scolding. I am praying that by fine tuning his meds we can eliminate the aggression he showed last week. I will continue to research for the right place just in case I have to go that way.
Di

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Di


Sat Sep 12, 2009 3:53 pm
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Joined: Fri Apr 03, 2009 9:55 am
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Garnet,
Thank you so much for telling your story. I look at what you have been thru and feel that if we don't change something that is going to be my path. We all feel guilty because we always promised my mom we would never put her in a home. I don't know how I can do it. We have offered for her to come live with anyone of us but she refuses, frankly I don't know if I could handle I but would try. One of my sisters is still not excepting the fate of this disease. She was very blind before but is starting to realize the extent of moms problems. She says she will never put mom in a home.
Hearing what you have gone thru brings tears. I know how hard it must of been and respect what you tried to do for your mom. I know in my head that we need to move mom but my heart is breaking. She too doesn't think shes home most of the time so I would think it would be easier but like you said no matter where they are they want to go home.
My sisters and I are going to get together and talk things thru and hopefully come up with a plan. Thank you again.

Gerry, I've often thought of how it must be living with a spouse with LBD. It must be so exhausting. I don't know how you do it but given the same siitution I would do the same. I guess we never knew how strong we were (are) unilt we are tested. Some days I feel like I can't take anymore but then tomorrow comes.

About the incontience, Thanks for the explanation. It makes more sence now. I try to get her to drink during the day but then stop in the evening. We are talking to the doctor tuesday about the meds because I did read that they are not recommened. The doctor said we should try it for a week and we would know how it effects her. She doesn't seem any worse on them.

Thank you all
Diana


Sat Sep 12, 2009 6:21 pm
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Joined: Fri Apr 03, 2009 9:55 am
Posts: 61
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Hi all,
My mom saw the doctor yesterday. He said because we haven't noticed any bad reaction to the Detrol LA he wants her to stay on it for awhile and see if it helps. He also wants us to keep note of when she is dry or wet in the mornings. He explained that alot depends on where the bladder is. that sometimes it's the way she lays at night that could just make the bladder release. I'm not sure I fully understand that. My sister took her so didn't get to ask more questions. We are also buying the tena breifs today to try.
The thought of a nursing home for mom is heartbreaking. My closest friend's mom had a stroke last month. she was just moved to a facility here in town. I thought it was a good one but she has had many problems already and has only been there a week. 2 days in a row she went to see her mom and she was wet. They droped her into bed one day and they only get a shower 2 times a week. Atleast I know that is not the place when we decide. How do you check out a facility? How do you know what really goes on there. It is scary.
We have hired another girl to help out. She will help some on the week ends and 1 night a week. Hopefully we can keep her at home longer.
Diana


Wed Sep 16, 2009 11:19 am
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Joined: Thu Jul 03, 2008 11:05 am
Posts: 150
Location: Raleigh, NC
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Diana:

Here in North Carolina, search for a nursing home would be aided by a start-rating system the state enacted to help differentiate the quality of care. It's not fail-safe, but it helps. Unfortunately, the same system does not apply to assisted living, at least not yet. (Mother's in the dementia wing of an AL facility.)

Visiting several times and talking with lots of people about experiences are the best steps to talk. Your local council on aging or Alzheimer's association probably has a checklist of things to look for. Several books offer the same thing. Of course, we had that and still made mistakes.

What you don't want to do is wait until you're in a panic about finding a place to know where you want to go. Many -- especially the best ones ---have waiting lists. Even if you're not ready to make the move now, it pays to be prepared and get on the waiting list of a preferred facility or two. When your names comes up, you can always say, not yet but keep me on the list.

Garnet


Fri Sep 18, 2009 6:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Diana,
I think showering 2x's a week is fairly standard for many facilities, We had to deal with a rehab for 6 weeks during our bout with LBD and that cured me, it was a nightmare! My husband was there for a full 8 days before he was placed on a showering rotation. I showed up at many different times during the day and evening, it didn't change much. In the morning they came in with a basin to wash with , he didn't even know what to do with it, it was sad!

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Irene Selak


Fri Sep 18, 2009 8:40 pm
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Joined: Thu Aug 30, 2007 6:15 pm
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Location: Charlotte, NC
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Tony's facility gives showers three times a week. However, they have never showered him, I do. I shower him every night after dinner and before bed. In the last month they have had to help me get him up from the shower chair. I feel better when I put him in bed and he falls asleep, he is clean, with clean clothes, clean depends, and shaved. Seems the least I can do for him. I also bring his clothes home and wash and iron them. He is the best cared for resident in the facility. You are right, my mother was in a very expensive well thought of facility and she did not receive the excellent care that he gets from me. As others have said, you must drop in unannounced and check it out. Caregiving does not stop when your loved one is placed, it is just different.


Fri Sep 18, 2009 10:01 pm
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Joined: Fri Jun 26, 2009 9:39 pm
Posts: 92
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Just a thought about nursing home care. We only have one patient and it is exhausting as you all know. Trying to take care of 4,5,6 or more of my dear Johnny would be impossible. Still, we all want more for our loved ones, don't we? So maybe twice a week for showering is the best they can do. I've volunteered at nursing homes, though, and I have seen bad care. It's usually the same people every day who seem lazy, just sit around, even when we ask for help. Not my patient, etc. And then there are some who can't do enough for you. Hope everyone who needs nursing home care finds that special caregiver. But I would be like you, there every day doing the same things I do here. I couldn't leave his care to chance. He's too dear to me. Blessings to all. Judy


Sat Sep 19, 2009 12:49 pm
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Joined: Fri Apr 03, 2009 9:55 am
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thank you for the replies. I atleast know how to start the process. I know the caregivng would not stop if she went to a home. we would all still go everyday, I guess I just thought she would be safe durning the day while we work and at night. Some stories I hear make me think I would worry more.
The new caregiver is meeting mom tonight. We like her and she seems like she will be kind and caring, just hope mom likes her too.
I took the week end off and went away for a rest. Hopefully I am now ready to deal again!! It seems to get harder everyday.
Diana


Mon Sep 21, 2009 8:57 am
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