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 Coping with what we have to do... 
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Coping with what we have to do...
Mom’s now been in the dementia unit for 14 months. Things have gone pretty well, but a couple of things have taken place that have me wanting to give up and just bring her to the apartment I will rent when I finally get rid of my townhouse. (I’m just not good at home ownership. I worry too much about the house and what will be the next thing I need to fix or replace. Renting is, for me, a stress reducer.)

There are several new residents in the unit. A few of them have disruptive and sometimes overt behaviors. Occasionally they frighten the other residents, including Mom. And the staff is being moved around. Still the same people (mostly) on the unit, but the residents they each care for is changing. I’ve talked with the administrative people about how important consistency is, but to no avail. I’m guessing that they do this so that no individual CNA has to deal with the same difficult residents all of the time. But it is an upheaval that Mom didn’t need. They have also had a couple of CNAs quit, one of them a favorite of Mom’s.

Logically, I know it makes better sense to leave Mom where she is. But a huge part of me hurts when I have to leave Mom and another resident is raising a ruckus. (Mom can’t do much. She can’t talk and she’s not strong enough to really hit or kick.) Luckily, Mom and I made sure that my youngest sister has POA for medical matters. We both felt she would be better at the tough stuff when the documents were being written. My sister teaches junior high, so she’s good at dealing with making decisions in highly emotional situations.

Any thoughts on how I can let this go?

Thanks.

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]


Thu Feb 02, 2012 1:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Coping with what we have to do...
Kate, I know what you are going through. Staff rotation is a fact of life for the reason you stated. And because my husband has been, at least off and on, one of the 'disruptive' ones, I can understand why they don't want to get stuck taking care of a difficult resident every day. It's a shame and, IMO, has a negative effect on care quality.

There are other issues at the SNF that need my attention--just this morning, for instance. I had to come home and take a 1/4 Xanax because I was so upset. Yesterday, I noticed Derek was on the 'bowel list' X4 days, that is, he didn't have a BM in four days and he should have gotten something after 3. When I asked the day nurse about it yesterday she said she would give him some MOM at noon. Well, she didn't and he still hasn't had a BM. I was furious but it was a different nurse today [a better one] who says she will give him some MOM with his noon meds [he was in bed asleep or I would have had her give it right then]. While their aide:resident ratio is very good, their nurse:resident ratio is not. They are overworked and understaffed but it is no excuse! OK--now I've vented, too.

Every time I consider bringing Derek home my back gets a twinge, reminding me of why I had to place him. Kate, you know you had to place your mom for good reasons. Work with the staff, consider hiring a 'sitter' [maybe a student] who might come stay with your mother part of the day or evening when you or your sister can't be there just to make sure she is safe and cared for. Hope it all works out! Nothing about this disease is easy, that's for sure!

_________________
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.


Thu Feb 02, 2012 3:26 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Coping with what we have to do...
Thanks, Pat. I never thought of a sitter. I don't know if we can afford one. Mom's on Medicaid and is only allowed $90 a month for her own use. We generally take that up by taking her to get her hair done (we'll do that for as long as she can help us get her in the car) and sundries (shampoo, toothpaste, body wash, etc.). But they do have volunteers there - a lot of them. I think I'll check into their volunteer program and see if I can get someone to give her special attention. Beyond that, my sister teaches in a nearby school district and sometimes has time to stop by during the day, so we are able to make impromptu visits.

I just grew up worrying about everything. Mom worried about everyone and everything and I guess it was contagious. That and I always second and third guess myself. I'm working on that with some counseling.

For what it's worth, I think the only reason Mom isn't loud and bitter is because she can't talk. But she does point her finger at people and glare at them like she's angry. The staff and some of the residents have caught on that if they point back at her and smile long enough, they'll get a smile back.

I've noticed how important it is to keep up on Mom's daily health, too. The NH has a policy of requiring that a nurse or administrator sit with us when we look at Mom's medical record (not sure that's entirely legal). They explain the reason being that parts of patients' records have gone missing when they have let families look at them alone. It's OK. My sister can make someone sit and wait for hours while she does something. (I mentioned she teaches jr high, right?) She's starting a practice of reviewing it on a schedule.

But I've found that the staff either doesn't notice everything or discounts things because they think it is just part of a patient's behavior. One lady had a really nasty cold, but even the best nurse there didn't pay her much attention because she always complained of being sick. It wasn't until I called the staff's attention to it and pressed that this was more than her normal behavior that they even took her vitals and realized that this was a real illness. So I make a point of calling their attention to anything that doesn't seem right. Yes, they too are understaffed and overworked. But this is my mom.

We make a point of having one of us with Mom for at least one meal a day. Seeing us be there at that time has started family members of a couple other residents doing the same. I think the daily contact does a couple of things, as far as Mom's care is concerned. One of us is there to observe anything that might need attention and we aren't shy about calling a nurse's attention to it and sometimes staying there until we see some follow through. The staff sees us there and knows us so they, I think, pay more attention to Mom. Having one of us there for a couple of hours a day eases Mom's need for staff attention unless really necessary. And Mom is able to do some things that she couldn't if we weren't there - like napping or watching TV in her room with the door shut allowing some peaceful moments. Even if she gets a chance to nap in her bed during the day (usually in her wheelchair all day), the door has to be open so that the staff can see if she has a problem. And, of course, constant communication with the DON is so important. It's sad, but I think the people who do get more visitors also get more or kinder attention from the staff.

I know it is hard to control behaviors. Just when you think you have one dealt with, another pops up. It is just a fact of life. And every once in a while, someone does something a little fun. Like when the meanest, _itchiest woman there was told to shut up and behave herself by this really wonderful 100-year-old woman. The room burst into applause. Sometimes the residents can regulate themselves.

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 Feb 03, 2012 10:23 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Coping with what we have to do...
What a great example, Kate. That would have been a great moment to have on videotape, wouldn't it?

Yes, I am very fortunate to have the time to spend with Derek every day and to help him with at least one major meal. You are correct that daily visits, vigilance and communication are key. But you can never relax.

I will say this in favor of the staff at Derek's SNF: They are helpful, kind and extraordinarily patient with every resident, even those who have no advocates. They treat every resident as a unique individual and with the utmost respect. So I am willing to forgive [but not overlook] the occasional lapses in care. Caring for these folks is a very difficult and trying job and these care workers deserve a lot of support.

_________________
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 Feb 03, 2012 10:47 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Coping with what we have to do...
I think leaving your mom where she is is the best bet for now. But it's good that you are really on your toes with monitoring what's going on. Things can change for the worse at any facility. Are there any other local options?

Have you provided to the care manager written documentation of the disruptive behavior and how it affects your mom?


Mon Feb 06, 2012 8:47 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Coping with what we have to do...
Actually, things got a little bit better over the weekend. Then Mom had real anxiety problems yesterday and, wouldn't you know it, the loudest, rudest, resident was moved to Mom's dinner table. I stayed with Mom (as I usually do through dinner) and kept her as calm as I could. Then we left the table as soon as Mom had enough - of food and company.

Overall, things aren't as bad now. I suppose it was just a particularly bad few weeks after the holidays. I email often with the DON for the dementia unit. She is the wife of a co-worker of mine, so we had something in common, which helped establish a relationship. In these emails, she told me last week that she had a request in for the same thing I suggested for monitoring areas not easily visible from the nurses' station - hallway cameras. (If they are in the hallways, they don't create privacy, as in room cameras would. Over the weekend, the administrator in charge of buildings and grounds was in the building, so I mentioned to him how important these were, especially in a dementia unit. Every voice helps.

This is why my sister makes medical decisions instead of me. I react impulsively.

Thanks for the encouragement.

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]


Tue Feb 07, 2012 9:43 am
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