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 Arranging for Respite Care 
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Arranging for Respite Care
Pat, what are you seeing that you don't like. Tell me, so I know what to look for. We are getting closer to placement all the time. Yesterday I hid all the knives and screwdrivers, etc. No threatening activity...just found him inthe kitchen waving a screwdriver around. Nan


Sun Dec 19, 2010 4:03 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Arranging for Respite Care
Nan, I know that no facility is going to be perfect and that the best of care won't measure up to the one-on-one care he gets at home but so far I have seen:
1. They changed his catheter night before last. I'm not sure why [it was 'the night shift'--that mysterious band of renegades who apparently never do anything right and get blamed for everything]--maybe the other one was plugged but I doubt it, as I just inserted it on the 13th. I noted the next morning that his foreskin was still retracted. This is a big no-no which can lead to all kinds of problems. I had a heck of a time pulling it down again as his glans was swollen.
2. His catheter is leaking [which it does from time to time at home, which is why he wears Depends] and every time I've been in to visit [2-3 times/day] he is wet and reeks of urine. I'm afraid his skin will break down. Of course, I clean him and change him while I am there.
3. While some of the aides are wonderful and anxious to give good care, others really don't care and don't seem to check on him at all unless he rings the call light, which he never does. He simply cannot connect the purpose to the button. So if he needs to use the toilet for a BM and can't make it on his own, he is SOL [no pun intended]. Fortunately, I was there yesterday when he needed to go.
4. Their meals are scheduled strangely and may suit others just fine--breakfast is served at 10AM!! For early risers they offer a 'continental breakfast'. Lunch seems to be 'whenever' and I have no idea when they get dinner.
5. The whole place seems disorganized and it's almost impossible to get any information or communicate other than taping notes with large print on the closet door.
This is a highly-rated facility--not quite as high as the dementia care unit he was in summer 2009--and it was also recommended by an acquaintance whose husband had been there. And, I know this is a nursing home, but I look around at the other residents and then look at my handsome Lewy Love and think, 'Does he belong here?'

Sorry for the ramble--there are even more things and maybe I'm being unrealistic. Incidentally, while the dementia care facility was better [except he lost 20 lbs in three months and his skin broke down for the same reason as I mentioned above] but no private rooms [he's not a companionable roommate] and they almost never have male beds open up--I had to put a deposit down months ahead and got lucky finding a bed there before I sold the house & moved, etc.. They only take residents who are independently mobile [either alone, walker or w/c] which Derek often is not these days.

So, Nan, start looking now--you might have to get on a waiting list. I can't wait to get Derek home again.

_________________
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.


Sun Dec 19, 2010 4:36 pm
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Joined: Sat Jul 31, 2010 5:28 pm
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Post Re: Arranging for Respite Care
Okay....big question, Pat. How is your level of care....for you? Nan


Sun Dec 19, 2010 4:46 pm
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Post Re: Arranging for Respite Care
Thanks for the info on the NH Derek is in. I am suspicious of Nursing Homes in general, given the experience we had with one of them in '08. I am not ready to put Del in one of them, but if it comes down to my health versus his, I know where I will be.

Del sems to be less agitated today and more able to hear what I am saying. I am pulling him off the Vicodin they gave him Monday night when he broke the bone and separated his shoulder. I am wondering if the Vicodin would be a reason he was so out of it. Anybody have this experience with vicodin? Thanks, Nan


Sun Dec 19, 2010 4:54 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Arranging for Respite Care
Oh, Nan! I didn't know about Del's injury! Even an injury, by itself, can cause a decline, as can infection or surgery. Maybe the Vicodin could be part of it, too.

My level of care--that's a good question. I'm getting a hospital bed for him--my daughter is bringing one up that was her dad's before he went into hospice. It's a nice, electric one and I had been planning to just rent a crank-up type.

My back is better but not well. If I have to have Thom come in every morning for a while to get him out of bed, so be it. Thank you for asking. Hugs, Pat

_________________
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.


Sun Dec 19, 2010 5:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Arranging for Respite Care
Pat - that doesn't sound like he's getting good care at all. I don't blame you for not wanting him there - who would? I am glad we had a totally different experience with the ALF where my dad was, and I'm glad he went there before he became so incapacitated they wouldn't take him. The 2 NHs I looked at sound like they could be similar to where Derek is. There is no excuse for that lack of care. Have you talked with the administrator? The times I thought things were amiss with my dad, they were corrected within min. of my talking with the director.
I hope YOU are doing better today Pat. Lynn

_________________
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.


Sun Dec 19, 2010 5:53 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Arranging for Respite Care
nandel8 wrote:
I am suspicious of Nursing Homes... I am not ready to put Del in one of them, but if it comes down to my health versus his.....

You and I agree completely, Nan. My mother was in a private 'home' for 4 years before her death in September at 104. From what I'm reading here, I am reassured that she received good care. Meals were always on time. I know that because we deliberately visited her at various times during the day - often to feed her. She was always clean and her room was neat - even though she pulled the drapes and curtains down early in her stay. She was totally incontinent and would often have excrement and little pieces of her diaper all over the room in the middle of the night before someone noticed.

We know that she was a terribly difficult patient. She was 101 when she was admitted so they expected she would die soon. Bless them - they continued to put up with her awful behavior day after day. We would often see evidence that she had bitten her care givers. I don't know how they could stand her. I only know that my sister and I could not care for her. She was too much for us.

I can only hope that Dale never gets to that place.... I don't envy those who give their lives to caring for such patients. There must be a special place in heaven for them.

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


Sun Dec 19, 2010 5:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Arranging for Respite Care
Pat,
This level of care is not exceptable in my opinion, I certainly understand why you want to get him home but I am also glad you are willing to except the need for more help and yes the Hospital bed will be a help with many things and this is a good time to make that change while he is away.

For all the reasons you mentioned in your post is the main reason my husband remained home we had a short stay in a rehab and the care was appalling, they had his bed on the floor because he was fall risk with everyone walking over the mat and he was to roll out of bed, 8 days there never had a shower, everyday they came in and put a basin of water in front of him on the table and he didn't even know what to do with it, he was supposed to be there for I think 21 days I took him out on the 8th day when I figured out he never had a shower and then he had 2, 5 day stays at a hospice house for respite but I must say the level of care there was great.

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Irene Selak


Sun Dec 19, 2010 7:04 pm
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Post Re: Arranging for Respite Care
Yes, I did talk to the administrator on Friday [I put him in on Thursday] and there were some things improved but on the weekend things seem disorganized. Today, though, he was quite calm and things were a bit quieter. I think even a really good NH will not be adequate for someone who will not or cannot use the call light, is too impatient to wait for help and has a catheter that needs a lot of attention [or is incontinent]. Or is uncooperative.

I talked to someone else today whose husband had been there and she said it's not a bad place if you stay on top of the staff all the time. Just as with the other facility he was in, I find I'm doing a lot of the care myself and wonder if it gets done at all when I'm not there. So, no...I don't see it as a long-term option. He's been in an ALF, a dementia care unit and two nursing homes now and I wasn't happy with any of them. I think people realize they are less than adequate [or, maybe as an RN I see more deficiencies than someone else would] but there comes a time you have to do something with your LO, so want to believe the best about them. I know the Hospice Center where my ex-husband recently received care was excellent and I've heard that from everyone. OTOH, there are hospice centers that are less than stellar.

His doctor visited him at the SNF this afternoon while I was there and I told him of some concerns and he wrote some explicit orders and also ordered PT at my request. He couldn't be nicer or more caring. We both like him very much and it was good to see him there. Not all doctors will even visit nursing homes.

_________________
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.


Sun Dec 19, 2010 8:36 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Arranging for Respite Care
On a more positive note: Evenings, when I am home in the quiet house are simply heaven!!! :P

_________________
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.


Sun Dec 19, 2010 8:39 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Arranging for Respite Care
You are so lucky to have a doctor that would make a visit to a NH. When Del was in, there was a Nurse Practitioner and I got the feeling that she was there to "head 'em up and move 'em out." She spent very little time seeing actual patients and seemed to rely on what the charge nurse told her about the case. Not very hands on. So I am not very anxious to start placement.

I am glad you are having quiet evenings. They are restorative, and what you need.

Smiles, Nan


Sun Dec 19, 2010 9:02 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Arranging for Respite Care
Without a doubt, your level of knowledge makes you a very discerning customer. The rest of us are probably not as aware as you are. I have trouble going to amateur musical concerts for the same reason. :roll: People always assume that because I'm a musician, I really enjoy hearing others. I don't - unless they are top quality.

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


Sun Dec 19, 2010 9:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Arranging for Respite Care
I may have been unduly critical of the SNF in my response to Nan after three days into his respite. Not that I'm thrilled with the place but here are some extenuating factors:
1. When they changed his catheter on the night shift he was combative. Maybe when they attempted to replace his foreskin he simply wouldn't let them. I know he wouldn't let me or the aide touch him the next morning.
2. The care plan shows he has an indwelling catheter and, since they are not yet familiar with his tendency to leak, the aides probably weren't looking for wet pants [though I could smell them, couldn't they?].
3. The aides are getting the message that he won't/can't use his call light and they need to check on him to see if he needs help.
4. He seems happy with the meals--he always asks what time breakfast is, even if he just finished dinner. He asks that at home, too. It's one of his all-purpose questions, I think.
5. It does seem chaotic at times but not as noisy as a hospital.

It probably bothers me a lot more than it does him. As I stated before, he doesn't know he's not home, he just asks where my bed is and if I'm going out. Even so, I'll be glad to get him home before he starts developing a rash. They only do showers twice a week there [I shower him three times a week but also do thorough peri care two or more times a day].

One cute note: For breakfast they brought cream of wheat, scrambled egg, juice and chipped beef on toast. I said, "Oh, I see they brought you SOS!" He said, "What?" I said, "In the British Army, didn't they call that SOS, ---- on a shingle?" He nodded and kind of chuckled, silently. I love to see him chuckle! :P

_________________
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.


Mon Dec 20, 2010 11:34 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Arranging for Respite Care
Update: From what I've been able to determine at the SNF, from what I've seen [or not seen], he has not had a shower yet in the four days he's been there. According to his 'schedule', he's supposed to have one on Thursdays and Saturdays. I brought him in on Thursday and know he didn't have one then and I was there most of the day on Saturday and am darned sure he didn't have one then. So, assuming I pick him up on Thursday, his 'shower day', he'll have gone the whole week without one! :shock: He couldn't care less, of course, but I am livid!!

One of the nurses is supposed to demonstrate the 'sit-to-stand' machine today so I can decide if I can use one at home, if I can find one available. They cost thousands of dollars so I will either rent one or buy a used one if they work with him. I think I'll post this in another thread to see if anyone has experience with one.

_________________
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.


Mon Dec 20, 2010 4:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Arranging for Respite Care
Is it possible that he has either told people he doesn't want a shower, or he's been combative when they tried to take him? This happened when my dad first moved to the ALF. Instead of insisting he get a shower, they just let him get away without having one. When I came to see him and it was obvious he hadn't showered in a while, I talked with the staff, nurse and administrators about this. He would say "I don't take showers at night." The next morning when they tried to give him one he'd say "I don't take showers in the morning." Then it was "I'll take a shower after the football game is over on tv", etc. That had happened several days in a row. I told them they needed to figure out something because he really needed a shower on a regular basis no matter what excuse he was finding to not take one. They did get it worked out somehow. When he could no longer sit on the shower stool with one person holding him up and one washing him, they put him in a whirlpool bath and washed him there. He fought that too, but once they got him in, he'd fall asleep in the hot water. It's another struggle, unfortunately. Lynn

_________________
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.


Mon Dec 20, 2010 5:41 pm
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