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 Figuring out what next 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Figuring out what next
I've been away from discussions for a month or so, dealing with Crises in Geriatrica. My parents are 95 and have been in independent living in a retirement community we chose because, in addition to being just a few minutes from my home and office, it has assisted living, skilled nursing, and dementia care. Even with my mother's (early) LBD, they have managed all right, more recently with a care assistant for 2 hours a couple of days a week. But the evening of Dec. 17 my father, who has severe lumbar spinal stenosis and increasing weakness of legs, had a fall and couldn't get up, and my mother was too sound asleep to help. He finally (after 3 or 4 hours!) rang his wrist-call-button for help and was taken to the ER and hospitalized, very weak and with dangerously high blood pressure.

I didn't find out any of this until 3 the next afternoon - my mother apparently slept through the excitement, woke up late, and assumed my dad had gone out for a while. When I came at noon, she assured me he would be right back. Finally found out when he called from the hospital (I had been looking all over for him.) He was discharged Dec 22 to the SNF for rehab. He's been back to the ER twice. Was in six hours on Christmas eve after a fall in the bathroom (nothing broken but a very nasty head laceration - the SNF finally believed me about high risk for falls and put him on a monitor, and he finally listened to me that he would cause a lot less trouble if he'd ask for help to go pee instead of dragging me to the ER). Then last week he had another episode of hypertension. But he's working hard at his physical and occupational therapy and we hope he can be discharged in a couple more weeks.

Meanwhile, of course, I've had to make sure my mother is ok. She might be able to cope by herself, 90% of the time, except for taking her meds - she'd probably survive by microwaving frozen corn dogs and tamalitos for breakfast and lunch, and they get dinner in a dining hall - but then there's the other 10%. I left her for a couple of hours to try to get some work done in my office a week ago and she decided the building was on fire and went out to the parking lot to wait for fire engines and make sure my dad got out ok. So I have the assistant 5 days/wk now and I'm there much of the rest of the day time (she seems to be ok at night except that she got up once and made herself coffee and then couldn't go back to sleep. Gaah.) She does remember where he is, and has gone down on her own a couple of times to visit him, or the assistant or I will go with her if she prefers, and now that he's better, I bring him back to their apartment for a couple of hours every day.

But long term, it's not viable for me to spend 10-12 hours a day running back and forth. (We were lucky that it was the university's break the first 2 wks, and now I'm on sabbatical, trying to get research done, hah.)

So we are looking at the alternatives. There is a nice assisted living apartment coming open end of Feb, but only one that would do for both of them, and someone else is also wait listed for it. Then there's the issue that it turns out that they do not accept anyone with dementia to their assisted living, and those who develop dementia have to leave. The senior nurse manager did evaluation on her on Friday but I haven't heard results officially; I gather, though, that she was in good form and probably 29 or 30/30 on MMSE. But even if they were there, it would really only work with my dad around, too, and only if she stayed fairly stable. We could do that with respite care in dementia unit if he became ill again. I think she is in far better shape than the typical dementia unit patient and it would be very devastating and bad for her to be there. So another option is to stay where they are, but increase the level of support. My niece will be here for a week, then my sister for 2 weeks, starting later this week, so I will get a break. We like their community, they have friends there, and the staff (nursing, PT, OT, and so on) are excellent, and they do have a considerable investment, so moving is not that practical. Also, we want to keep them close, and this seems to be the best local option.

Anyway, we are probably looking at a complicated time for however long we are blessed to have them with us. My husband and I both work full time and my daughter has two small children and her husband has his own health issues, but we support each other, and my sister, who's in DC area, is great about managing financial stuff long distance and coming to help a couple of times a year. Luckily we did all the paperwork for POA and other planning before all of this came up.

I guess there are no easy answers, huh? We are lucky that we have the good will of all involved, the resources and expertise to cope, and lots of experts to turn to. But it still feels like it just keeps getting more complicated!! Any advice from those who have been down the path would be welcome... and thanks for being there!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jan 09, 2012 2:09 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Figuring out what next
Hi Laurel,

Sorry to know what you've been up to the last several weeks! It was kind of your father to make his moves while you were on vacation...

Staying where they are sounds good. Are there any negatives? Is it a continuing care community?

Robin


Mon Jan 09, 2012 1:49 pm
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Figuring out what next
Hi, Laurel.

A few random thoughts:

It's amazing that, at 95, they have been able to live with minimal assistance. A big high-five to them (a gentle one).

Because your dad was hospitalized and is in rehab now, you may be able to get your parents preferential treatment for that one apartment. Mom was on a wait list for her SNF, but when she was hospitalized, they bumped her to the top of the list for the dementia unit and kept her in rehab until there was a bed for her. It might be the same for assisted living.

Mom's SNF puts monitors on patients who wander or go outside when they shouldn't. The monitor sounds an alarm and locks the outside door. Mom had one at first. The monitor can also be put on a wheelchair or walker.

When we were looking at senior/assisted living arrangements we found that you could set the situation up for 1, 2 0r 3 meals a day. Some of the facilities even had attendants to go to individual apartments and escort the resident down to the dining hall. An added benefit to that is that someone is actually checking on the resident at each mealtime.

If you need to be at their apartment for extended periods of time, you might want to set up network access there, if they don't have it already. Some buildings have wireless networks already in place and all you need is to sign up for access. I'm sure you already use VPN from home into the university to get to some of your files. You should be able to do that from anywhere.

Hope this helps.

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]


Mon Jan 09, 2012 1:50 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Figuring out what next
Yes, Robin, their place is continuing care - that's one of the reasons we chose it. The problem is a combination of sort of donut-hole (they want no dementia at all in assisted living, and yet the dementia care probably is for more advanced cases, from what I can find out) and two-body problem (he's more physically impaired but cognitively intact, and she is physically more robust but chancier cognitively.)

Kate, the assisted living is really great in having many of these features. They have 3 meals which can be taken in the small dining hall near AL, the large dining hall where they already eat their dinner, or the deli for breakfast or lunch. They would get 1.2 hours apiece of care assistance which could be used for whatever is needed. All meds are handled (admin, ordering) and also transportation free within our town. The apartment we want is about the size of their current two-bedroom; there is also a one-bedroom but it is way too small for the two of them and my dad's study. They do have internet connections and I have done some work there but it doesn't replace my own office, meetings, library, and so on. My dad has been on a monitor in the SNF wing because of his falls, but will likely go off soon. He is cognitively intact; the big problem was the hospital, who did not notify me when he was admitted or when he was discharged despite repeated efforts to get them to do so. (And yes, I have MPOA and HIPAA clearance and all.) My mother, thank goodness, doesn't wander! She has an excellent sense of direction and finds her way all around without problems. Time, not so much; she will head off for dinner at 3:30 pm if not reminded to check the clock.

I am hoping that they will get preferential treatment for assisted living; apparently this is possible, if my mother is not decreed to have too much cognitive impairment. That would depend on how energetic she was feeling at the time of testing.

Thanks for all the good ideas and support - we really are fortunate, and we know it, to have made it this far - 95, with my dad turning 96 in a month! - but it's still challenging.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Jan 09, 2012 4:03 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Figuring out what next
Oh, I didn't read your first post well because I didn't realize it was the continuing care facility that said "no dementia" in assisted living. Can they really do that -- either legally or practically?

I still think trying to stay put (in the same community but maybe not in the same physical room) as long as possible is best.


Mon Jan 09, 2012 5:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Figuring out what next
Laurel - you certainly do have a lot to deal with, with 2 elderly parents with different health issues. Why can't your dad go to asst'd living and your mom go to the dementia unit where they are? If she is pretty high functioning, I know that can be an issue since I went through that with my dad for a few months. He got very upset and frustrated seeing how bad off some of the people were in the dementia unit and he only had to go there for meals for a couple of months. But he was aware enough to know he wasn't "one of those people" (his words!). But you can't keep going like you are so you need to do what's best for you too as you balance all these issues. I hope you get things settled soon so you can get on with your own life. 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.


Mon Jan 09, 2012 5:28 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Figuring out what next
Back again - my dad was discharged from SNF unit yesterday and is back home with my mom in their apartment. He worked really hard at his PT and OT every day and will continue on outpatient basis, and he's much stronger (I told him last week that I thought he had some good-looking calf and thigh muscles now, some real definition showing up.) My sister is out till next week, and we have rearranged furniture, acquired more aids such as bed cane, toilet extension seats or whatever one calls them, and so far, so good. We have tried to impress on him that he needs to use the walker all the time, and I told him that I am really not that keen to get frequent-flier miles at the ER, now that they know my name and recognize me when I walk in the door. It's hard, though, for him to accept limitations. Still, he has no desire to go back to SNF so he's doing his best.

My mom is actually doing fairly well. The assisted living screeners concluded that she was nowhere near their dementia exclusion criteria, but that they would both benefit from AL, so they are on a waiting list - the only two-bedroom available was promised to someone else. Took her for check-up to cardiologist yesterday and she navigated her way around the huge building with perfect memory from six months ago, including remembering that we had parked on second floor of parking structure this time. The extra dose of seroquel (another 12.5g in morning, not just at bedtime) seems to have helped her delusions - no one has been kidnapped or carjacked lately, and the building hasn't been on fire since early January, before i changed her meds. She's sleeping somewhat more but that's not a real problem, and her visuo-perceptual problems really have pretty much put an end to reading more than headlines. I think it also helped that I banned the 6 pm local news! Instead, she's become a Rachel Maddow junky (she is a TX progressive out of the Molly Ivins tradition) and this doesn't seem to trigger any anxieties. Then she watches Wheel of Fortune and tries to guess before the contestants, and actually succeeds pretty often. Her executive function is still toast, and she is still scratching her nose rather mindlessly, but guess that goes with the territory.

We can't know what the future will bring but I wanted to say thanks for all the encouragement and support, and to report something cheerful, a positive change, however temporary it may be!

So things are stable here for the time being, and

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Jan 27, 2012 9:10 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Figuring out what next
Thanks for letting us know, Laurel. I've missed you around here, but I certainly understand that your attention was/is needed elsewhere.

It sounds like things are going remarkably well under the circumstances. I don't wish anyone else bad fortune, but I hope a suitable apartment open up soon for your parents.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Jan 27, 2012 9:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Figuring out what next
Laurel - maybe you can get your mom to be a contestant on Wheel of Fortune! And you could go with her to get a little break from the normal routine! 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.


Fri Jan 27, 2012 9:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Figuring out what next
Laurel,
What a positive update! So good to hear. I like the image of your mom watching Rachel Maddow! Hope they can get a two-BR apartment soon.
Robin


Sat Jan 28, 2012 2:42 am
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Figuring out what next
Wow, Laurel. Your parents are amazing. I hope they know it.

I'm glad you're back. I've missed you.

I didn't know that Rachel Maddow is Ivins-ish. I'll have to watch now. I really miss Molly.

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 Jan 28, 2012 10:42 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Figuring out what next
Hi again,
My sister has returned home, so I'm back to full local responsibility for the Geriatric Set. This now includes the samoyed, Laska, who is almost 14 and was just diagnosed, like my dad, with lumbar spinal stenosis (probable, as I'm too cheap to do an MRI or CT on the dog given we would still do same care.) So my dad and Laska have PT 3 x/ week, unfortunately, not together, which would have been totally awesome. The vet wrote up four pages of instructions on dog-PT, very helpful for the dog, but somewhat time-consuming for us. My dad will be 96 this week, and he's working doggedly, as it were, on his own recovery, and does not want to be reminded about the approaching milestone.

And my mother is still scratching her nose, and the effectiveness of a slice of tegament has worn off as she now just picks at that, too. She is adrift in time somewhat more, and somewhat more passive and quiet. A friend of my sister's, whose late parents were very close to my parents, came to visit. My mother asked her to give love to her folks, and J looked somewhat taken aback, and then my mother realized what she had said, and remarked sadly, "Oh yes, we miss them so much..."

Kate, I'm not sure whether Rachel Maddow is Molly Ivins-ish except that she is funny and progressive, but my mom is from TX and definitely grew up in Molly-land. (I can see that my pronouns were not securely attached to their antecedents; no wonder that was unclear!)

So we are all hanging in there - my dad with his walker, my mom watching Rachel instead of the nightly what-burned-down-today saga, our sammy putting up with extra work in exchange for more treats, and my husband, daughter, her husband, and the small children pitching in to help where they can. As the 7-year-old would say, "May the Force be with you!"

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Last edited by labeckett on Tue Feb 07, 2012 3:16 am, edited 1 time in total.



Mon Feb 06, 2012 6:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Figuring out what next
Laurel -

"My dad will be 96 this week, and he's working doggedly, as it were, on his own recovery..."

Ha-ha! Hope he has a good birthday celebration.

Sorry but I can't remember the nose itch issue. One anti-itching medication we loved was Luxiq. It's a spray-on foam. Expensive but actually worked.

Robin


Mon Feb 06, 2012 8:43 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Figuring out what next
Hi Robin,
Luxiq sounds really great for itching - but I'm not sure that's what is going on! We've tried other corticosteroid meds, and she says in fact it doesn't itch. She seems just to like scratching, some sort of tic-like behavior. And it's not exactly or always scratching, sometimes just stroking her nose, sometimes picking at it as if something is stuck there, sometimes actual scratching. It also seems to move around - last week she started scratching her chin, and she has a raw place now. She has absolutely no control over this. She will tell you she is not itchy and won't scratch because it isn't bothering her, even as she starts to scratch again. We have tried giving her something to keep her hands busy, putting a sock on her hand, putting bandaids or skin films on her nose, and of course all sorts of lotions and such to try to soothe it. I think the problem is in the brain, not the skin. Sigh.

I guess we could try it and see if it helps, huh? Anything that might help!
Thanks!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Tue Feb 07, 2012 3:14 am
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Joined: Thu Apr 21, 2011 9:07 pm
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Post Re: Figuring out what next
PS, Kate, I miss Molly Ivins like crazy but I have most of her books including two personally inscribed, one to me and one to my mom!

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Tue Feb 07, 2012 3:23 am
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