Parents caring for the parent support thread (Part 1)

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5401

The director of the ccrc called me today at 4:30 to drop on a bomb on me. Mom is supposed to move in 3 weeks. They are requiring my mom have 24 hr a day aides for her first 2 - 4 weeks there. Then they’ll reassess her needs at the time. They will work with her current agency and go to other agencies to find the person. After they assess her for a couple of weeks they will be the ones who decide how much help she needs. The problem is, it gets on my moms nerves to have someone there all the time. So much of the time she’s just sitting there watching tv she really doesn’t need someone physically there constantly. The only reason we’re getting her to agree to go there at all is so she can have a bit of privacy. The unit she’s going into is teeny tiny. Maybe 500 sq ft - a small kitchen, a living area and a small bedroom. Having someone else there 24 hrs a day would get on anyone’s nerves. But at the same time, I totally get their opinion and view on it. Totally and completely agree with them.

My mom may very well refuse to go there now. After my sister called him they’re going to meet on Wednesday. She asked him what if me, my sister and the aide she likes takes turns at first? Mom has such bad anxiety having a stranger will throw her into a tizzy.

She certainly couldn’t afford this place AND 24 hour a day aides. So I asked - if we can’t afford it, is the nursing floor an option. And yes it is. The problem is mom is a physical mess, but does not have cognitive issues beyond a typical 80 year old.

And isn’t every elderly person a fall risk? I don’t know how we’re going to get this very stubborn woman who wants independence but isn’t capable of it to accept that she needs to leave the apartment she’s very comfortable in now to go to this place now. The long term reason is because when her lease is up in June she’ll have to move anyway, but by then, could not qualify to get in this wonderful place we found.

If she doesn’t agree to go I have no idea what will happen.

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eyeamom, 24/7 seems very excessive to me. And if they are outside aids, how will they know the “level” of care she needs; I think you need to get them to do some better definitions of what they are trying to get out of this. Hugs, I also understand the panic feeling.

Mom’s AL place just upped the cost of her care $300 , doesn’t sound like so very much, but is a concern. And $900 looks so much better than $1200. And the LTC insurance isn’t going up because the level of care is staying the same. OW.

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eyeamom- these roads can be so bumpy. You seem to have a good feel for your mother and how to work with the options. I have had a parent with high medical needs, no cognitive issues in an AL with built in for all at no additional charge nursing care (order and manage meds, administer them, check vitals regularly, manage oxygen and illnesses, etc). During her 18 months there, she did eventually have times when full time aides were added as her terminal cancer progressed. She spent the last 2 weeks of her life in the nursing home at her facility.

In case any part of our experiences are helpful, here are a few observations:

  • all things being equal, most want to move their elder as few times as possible. Nursing homes do serve many without cognitive deficits, as their medical needs are high enough that the staff ratio and expertise are needed to effectively manage daily routines. Some nursing homes have a good activities program for those able to participate, some tend to have residents who are more isolated in their rooms. They may separate residents who need extensive assistance at meal times from those who can socialize. Also, if an elder care community has alternative memory care units, the nursing home may have a lower percentage of residents with cognitive deficits. Just variables to consider as your family looks ahead.

-As for aides 24/7 to start in AL, I would wonder about the following: is your mother likely to sleep through the night at home? Is she able to routinely push a call button if she needs lav assistance at night? Is there AL staff available for that? Was your mother the one who was evaluated during her UTI recovery (forgive my holiday haze)? Has her status changed since then? My mother was an epic faller in her last 4 years of life. AL made it clear that they could not prevent falls, but provided an environment where they could be quickly assessed medically and tended in house if indicated.

-If I were scheduling 24 hour aides, building in a frequent re-assessment of the plan with AL staff and particularly the option of eliminating the night shift (if AL staff was there) after relatively little time of a good sleep routine, as well as ensuring times for her to engage with AL staff and activities so that relationships are created apart from the ones with the “outsiders” would be front and center. I found that once my mother had aides, even in a place with excellent care standards, it was clear that she went off the list in the minds of staff for certain things. I occasionally had to remind staff that she was eligible for what other residents received as part of their AL, even though it was typically supported by her aides. I would not want there to be no room for staff to become engaged with a new resident and since down time seems especially important to your mother, protecting that is relevant. Ironically, if she becomes agitated by lack of privacy and frequent prompting, AL could determine that the extra care is more necessary. If you perceive her as likely to have increasing needs and the proposed staff pattern is not sustainable, considering how to make one move to higher care work well could be a possibility.

We decided to go the aide route rather than the NH route with my mother largely because my father and she could be in AL together, she loved it there, had made friends and would have felt the move away from her husband as a huge loss. Apart from those considerations, she would have been in the NH sooner.

Probably the most important thing is insulating your mother from all the ups and downs as this is sorted out. Hopefully, your sister’s meeting next week will provide a reasonable plan that you can all walk your mother through as smoothly as possible. I feel for you. The ambiguity in these situations can be the biggest challenge.

5404

I spoke with the director again today. She had a cognitive evaluation a few weeks ago, and apparently she freaked the nurse out sufficiently to make the recommendation that she had so many issues that she felt she’d need 24/7 at first. My mother is so stubborn, she’d rather suffer than do something unpleasant - like having people around a lot for 2 weeks.

The director is a very thoughtful, kind, knowledgeable, compassionate…the kind of guy you could just sit at his feet and have him assure you everything would be all right and you’d believe him. Honestly I know this place is the best place she could hope to go.

But if she’s going to dig her heels in and be stubborn and not go I will tell her no more support from me. I will no longer pay for the aides, I will not help her find another place (we have honestly looked everywhere) and if she wants to rely on my brother, she can. But to be clear - his answer all along has been “stick her in a home”.

I’m worn out by this.

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hang in there @eyemamom - saying prayers for you.

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eyeamom, I know the kind of director you are talking about. When Dad’s wife (not my Mom) went insane and went into assisted living, the director there was so kind and so nice and so calming. This was the first place she went, before her daughter decided to “get involved” and let her mom do whatever she wanted. … but that is another story.
Anyway, just sending you strength and will to persevere, it is a long freaking marathon. Once she is in a safe place, things get so so much easier. Hope you and she get there.

Now that Mom has been in a really nice place for a year plus, we are thinking of moving her to be nearer to my brother. I don’t know if his wife knows about that thought and it is JUST a thought right now. But if she were nearer to family, it would be better. The places do better if they know someone is watching, not a criticism just an observation, based on my experience. Mom always gets better care the two weeks after I have visited and talked to the aids/staff. Mom is doing things like not doing her laundry and not letting the staff do it (included in her bill, they should do it). Having someone there to remind staff “do the laundry” would be a help. Having someone to talk more to the Dr. would be a help. Yet moving is a big trauma to older people. Often, they die just after the move… was it the move or was the move because they were about to die? Who can say for sure? But I would like her to have a family contact more than once a month and with bro 400 miles away and me 400 miles away, it is tough. Plus he lives in a fairly inexpensive place, she could afford really really good care there. It is a thought given the recent price increase. I wouldn’t move her though until I talk directly to SIL. SIL feels about Mom the same way my DH does… so there is a need to check to see if she is OK with it. If not, Mom can stay where she is and we will find $$ and other ways to deal.

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That is tough to decide to move them. My mom has a HUGE network where she lives. She’s been in that town for 50+ years.

The director who is so calming and kind - offered to let her stay for a month for free to try it out before making any kind of commitment. He said he just knew once she had a month of them loving on her and caring for her she’d never want to leave.

A family friend told my mom she wanted to take her to a state run nursing home tomorrow so she can see what she’s choosing by turning down going to this place. I would seriously move into this place if I could. It’s so nice, just a gorgeous facility with so much to offer, and wonderful staff with the highest rating possible by every accrediting agency.

I’m talking through this with my sis - though she may only have paid aides 4 hrs a day, she has people over every afternoon looking in on her, bringing her water, fixing her remote, taking her to the doctor, bringing over supper, etc. She is actually getting 8 hours a day - 4 of it is through various relatives and friends. She by no means is independent by any stretch of the imagination.

5408

Yesterday I read that new book, Atul Gawande’s Being Mortal. And it was all very well (and I’d read parts already in the New Yorker) but how does one find nursing homes or other facilities that are like the ones Gawande praises in the book? The ones that offer more autonomy to residents?

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I just read the blurb. I do believe part of our culture is to preserve life at all costs. Quantity over quality. Part of it is fear, of death, part of it is also fear of lawsuits. I doubt you could find an accredited facility that didn’t try to always “fix” medical problems instead of managing the death with dignity.

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The hospital where my dad died managed his death with dignity, I must say. But he was very old and he had a very bad stroke. When I said no feeding tube, there was no feeding tube, per his living will and health care proxy (me).

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And my grandmother’s hospice. I’m training next week to vol at a local one, superbly run, extraordinary folks. But I think they’ll make me a greeter or admin.

Eyemamom, I’ve had to draw a line with my mother. Hope things work out best for you and for her.

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Gawande discusses several issues in his book. One that struck me, that I was talking about, was a different kind of nursing home. As we know, typically nursing homes are institutional places where residents are regimented, have to share rooms with strangers, and have to follow rules and regulations. A diabetic or someone with high blood pressure has to adhere to a strict diet, even if the person is dying, and even if they don’t like the diet. Meals are at a specified time. People who are unsteady on their feet have to use walkers.

Gawande makes the point that these nursing homes are designed for us, the children of the residents, not for the residents. We want our parents to be safe, but our parents have different goals and desires. They want autonomy.

Gawande describes several facilities that are designed more for the needs of the residents themselves. One of them is organized in pods, where each pod has about 12-16 residents, and is like a house, with a dining room, a kitchen and a living room. Residents can wander into the kitchen to get a snack. Diets are not strictly enforced. It’s more like living in a house than living in an institution.

I recommend reading Being Mortal. It’s a quick read, but provocative.

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Culturally, we aren’t so great at contextualizing health decisions and even with frail elders, issues can be looked at in isolation. Heard part of a Gawande segment on NPR and hope his ideas can gain traction. Liability fears, ignorance and denial may drive some of this.

I like his attention to accommodating individual preferences in care settings. Interesting topic as while we are learning more about end of life care and hospice issues, there has not been much impact on the often longer and equally important phase of needing some assistance, yet wishing to enjoy autonomy. If particular routines or diets keep an 85 year old happy and don’t compromise others, why not? My father’s place likes to describe itself as “resident driven”. It is an important goal, not always fully realized.

Thanks for sharing, CF. I hope as us baby boomers age, there will be more options.

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The main point of Being Mortal is that doctors and other health care professionals, but especially doctors, think their job is to fix people. But some things are not fixable. He wants doctors to stop thinking about how to fix old age and terminal diseases, because they are unfixable, and instead focus on how the person can have the best possible life given the unfixable problem.

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I think another thing with some of the books by doctors and others is that one has to be thinking for yourself about your situation/your parents’ health situation etc. I have countless examples of how a doctor can miss a diagnosis or a treatment option, or something simple like PT, OT. I was ‘guilty’ of trusting my long-time OB/GYN instead of listening to my gut and the 10 weeks of misdiagnosis almost killed me (cancer - went from stage I to stage IIIa in the 10 weeks). Just went to a funeral of a 54 YO friend who had successful breast cancer treatment only to have ovarian cancer several years later (and a doctor early on even told her he would not be surprised if she eventually contracted ovarian cancer) - she just wasn’t processing the medical information and sharing the right information with medical providers or friends (like ME!) What doctors will tell you and what they won’t unless you directly ask them!

I have very good insurance and not afraid to use it to live a good quality life. Staying cancer free (which is 50/50 with stage III disease).

Tip for the day - make sure doctor takes stethoscope to carotid arteries (in your neck) to listen for the blood flow. FIL’s doc somehow missed this on him (and FIL was in his 80’s and already had some small strokes!) One carotid artery was 99% occluded - surgeon was shocked any blood got through (we have a picture of the obstruction). My docs do this as part of my physical exam and I am 58.

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My mother has been in the hospital with the flu for almost a week. Being able to be there most of the time (I have sisters) is the only way to do it. Relying on the CNAs to do things properly or for mom to process what’s been said doesn’t work. We’ve had a few things go wrong that we were able to catch and get corrected in real time. Folks on their own just can’t do that. The RNs have been awfully good.

This has opened my eyes to dealing with elders and medical care. Recovering from flu is hard enough when you’re young and reasonably fit. When one is old and not at 100% anyway, it’s not easy by any stretch. We have to talk about a short rehab stay to get strength back. I’m glad I have lots of sick leave I can use, plus the option of working virtual.

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The flu has killed some children - I think I heard 15. Sorry about anyone hit with it.

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Another good book is How Doctors Think by another doctor writer for the New Yorker. .This is why doctors make less aggressive decisions about their own health care than others. Usually, if the family makes confident decisions to withhold care, it will be withheld for those at the end of life. The default is to “fix” the problem. Hopefully these easy to read books will gain more traction in our society. At my parent’s CCRC, the default is to do whatever can be done to keep them at their house or apartment as opposed to a nursing home. However, 24 hour care at home is pricey and not doable for most. I agree, there should be more models of care that the elderly and demented can wander and maintain independence.

Speaking of 24 hour care, gosh Eyemamom, you are making the move to avoid that, and now are being asked to provide that. How frustrating. I wish I had an answer. But, it seems that a 2 week trial is reasonable and reassess if a nursing home is necessary after that.

I’ve been dealing with the flu this past week, very hard, especially since I had family in town for my brother’s memorial we also organized. Hope I didn’t get everyone, especially our elderly, sick.

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Thanks for the book reference @GTalum - to comment on the opposite end of the spectrum, sometimes a doctor can take a ‘risk’ with someone - MDs are suppose to ‘rule out’ - and one that does not follow a true evaluation can miss something big. Taking enough time for health history. However families can help by having their medical information organized when seeing a new MD, so the doctor can use the time with higher level thinking on the particular medical situation. This is speaking from both sides of the bedside, as health care employee and as a patient.

For a person of faith, sometimes praying about the best way to proceed in the health care maze.

As a cancer survivor, I depend on the MDs that have done well with my care, and ordered the necessary tests in a timely manner (unlike the fired MD who did not follow ‘rule out’ and thought he was looking at a cyst instead of aggressive cancer).

The more one knows, the more one can advocate in an effective manner.

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It might be a new year, but the old issues are still with us. I wish all of us the strength patience, and insight we will need to care for our parents in 2015. I last posted in a crazed panic on Christmas Eve when mom wanted to back out of her commitment to the independent living section of a continuing care community. I spent Christmas day talking her away from the edge and she signed the papers and made the big payment last Monday. I wouldn’t say she was happy, but she’d come to an acceptance.

In the meantime, she had a firm offer on her current place (sold without a realtor). The buyers were very anxious to close and pushed the closing up to the 19th. The new place is being painted and they rushed to get it done so my mother could move in by the 19th. This past weekend, we rented 2 trucks, hired 4 strong college kids, and worked like mad (in the snow and rain) to move most of her furniture over. We figured we would use this weekend to finish sorting out unused stuff and then send things to either storage or Goodwill. Well…guess what happened this morning? The buyer backed out. I am sick about this. Mom’s current place is a complete mess and is missing most of the furniture. It will not show well. In addition, it will be a challenge financially to pay for 2 places for an undetermined time.

Please send either chocolate or wine my way.