Parents caring for the parent support thread (Part 1)

[esobay]

Thanks, all. There is no way I’d do a permanent feeding tube. The AL RN was talking about just a boost of nutrition through a nasal tube just the once. Mom had been doing pretty well, although not eating much and had lost SOME weight. Still went to meals and socialized. although dementia creeping up and eating short term memory worse; she bagan to lose some words. But then she got the flu just after Easter, lost weight, got it again and had a UTI on top of it. I was there two weeks ago and she ate baby food for me and then after a couple of days of that she went to the dining room in a wheel chair (felt too weak to walk). So I thought she was ok-ish. I thought perhaps she wasn’t eating or felt nauseous from the strong antibiotics. The staff was pretty great in stepping up aides to stop in and encourage her to take sips of Ensure or even just water. But she really stopped eating solid food even when she was in the dining room with the RN encouraging her . That is what made them haul her to ER and the potential of the tube. SO, I was hoping that fluids and more antibiotics (her UTI is still there after the 7 day course) would perk her back up. Lets just say she was not perked up when I talked to her today. And of course the RN and the Dr neither one called me back.

So it has been a sudden drop and when I was there the Dr said she’d bounce back. then the RN said she thought Mom just needed to get her strength back. meanwhile , another week of living on Ensure just happened. So hard to be not there. But don’t want to burn out being there when she might need me MORE later. That is the problem. Balancing …

runnersmom. yep 400 miles, too far to go quick, but close enough to feel like running up often. Bro is same distance to the east (I am south the 400 miles).

GTalum, sounds like you got what you needed and are glad you asked both sets of “experts”. There is a lot of wisdom here and even the wisdom that doesn’t resonate with us helps because it is support that comes from wanting to help.

And I appreciate the help more than you all know.

[SouthJerseyChessMom]

Esobay- sympathy for all that you are dealing with.
Not sure if this info helps your mother, but perhaps others dealing with dementia. I’ve learned, through Teepa Snow’s you tube training videos, that dementia is brain failure, effecting not memory alone, but the five senses- including taste.

http://blog.beclose.com/?p=748
Here she describes some of taste changes
Q: Finally, how is taste affected?

A: They keep bitter the best, but sweet and salty tastes are reduced. They have to super-sweeten to get their sweet and they have to salt more to get the salt taste. Sweet and salt aren’t good things to have a lot of if you’re diabetic or when you’re hypertensive, but, because your taste buds are duller, you’re actually craving it more. And because you don’t have good impulse control, you’ll tend to overdo it.

Q: What’s the best way to handle these cravings.

A: Well, the common response is, “Mom, you’re putting too much sugar in there. You don’t need that much sugar in there!” Or, the patient may say to her daughter: “You can’t cook. This recipe tastes crappy. Why did you do that? I gave you a good recipe and you made it taste terrible.” And the daughter of course says, “Mom, it’s your recipe.” All this can lead to is an unproductive argument. In reality, there’s no need for an argument, if the caregiver understands that what is happening is not a battle over a recipe, but a radical change in the patient’s sense of taste. In many situations, we think that we are having a problem with each other, but in actuality—the brain is dying. Remember that.

[shellfell]

My mother was losing weight last year. She had been around 115, and went down to 102 over a period of months. I would not agree to a feeding tube or any meds to boost her appetite that the nursing home suggested. Her weight has now been stable at around 102 for the past 9 months. Your mother’s situation may be totally different, but I’m glad I took the approach I did.

[SOSConcern]

Has anyone used the Dr Phil relationship book or workbook? May give insight helpful before seeing professional counseling - can perhaps detail the problem better with the personal or marriage counselor. No one in this day and time needs to go through emotional anguish over boundary situations that can affect one’s personal well being and H/W relationship. I would suggest browsing on Amazon and local bookstore. Sometimes a little outside information can help clarify things better, and give confidence in getting counseling help.

[LasMa]

That’s very helpful, @SouthJerseyChessMom, and it applies not just to taste, but all kinds of other peculiarities. I have a wise neighbor who, when I’m venting about some difficulty with Mom, will say, “Just remember, that’s not your mom. That’s the dementia.”

[bookreader]

GT - I like the email your attorney wrote.

My comment about the SIL had more to do with her ‘putting her money where her mouth is’ than if the attorney would/should/could talk with her. If she had to pay to get involved with the care of the relative, then my opinion is that she would not do it. She’d rather bully you into giving up your rights.

[GTalum]

Actually, she would put up money to get involved. But, knowing there is no legal recourse, it is far easier to beat me up with accusations and moral superiority.

[bookreader]

GT: Fortunately, your SIL does not have ‘moral superiority’.
She can accuse but she has no grounds for anything of substance.

[SOSConcern]

Did any of you see the program on PBS about caring for aging parents? I don’t remember the exact title. I recorded it and watched it this weekend.

An area in Ohio had a property tax levy that is funding home care for elderly - care assistance, which helps people stay at home longer and lower their overall costs. Statistics show it delays 18 months average of more expensive care options (AL and nursing home care). Showed a 96 YO gentleman getting morning care, so DD who is a HS teacher had care relief.

An east coast lady had a mom that ran through $500,000 of money with care. The lady was older herself, so it was a solid estate. She talked about care not only bankrupting mom, but putting the next generation into having less resources for their own retirement.

They gave some averages - and how the outliers (an Alzheimer patient living 20 years for example) can be crippling financially.

They did point out some things a novice may not know.

It really leaned in on employers doing more (like flexible time so employees can help manage their relatives’ situation).

Had a person who worked for Target who was managing mom and career (after giving up another career to come back to care for mom).

AARP helped sponsor the program, so had their spin.

One Minneapolis guy and his siblings were managing mom - guy had his wife quit working and put so much on her when mom lived with them; it broke up their marriage. A dau took mom in and the guy was stingy with care $$ (he was her POA etc). There was an oversight organization that helped them focus on mom and resolve their conflict.

Had a company owner in LaCrosse WI that had his own mom in hospice care, and wanted to use more time with her. He implemented more flexibility in his company, and decreased turnover quite a bit.

They also pointed out a fellow with Gunderson Medical, also in LaCrosse WI, that over the years has helped with medical directives being completed by 96% of elderly in their area. I believe the avg elsewhere is a little over 50%.

I know our local hospital asks about medical directives (and provides paperwork if you want to complete it) as part of major medical testing and admissions.

[HImom]

Sadly, my aunt is reportedly losing interest in eating and everything. Her S did leave the day after putting her in this temp rehab facility and has not followed up, as far as we know. She is in a wheelchair in a lovely place but neither of her kids have shown any further interest in her. They have power of attorney.

[Cardinal_Fang]

@HImom, that’s sad. Is it possible to gently suggest to your cousins that if they want to spend time with their mother, now’s the time?

[runnersmom]

@HImom, hopefully the cousins will realize that now is not the time to disappear. My SIL’s father is battling leukemia and just took a fall. He’s in ICU and having cardiac issues, but what concerns her most is his lack of interest in eating. In retrospect, that act seems to indicate more than all the tests in the world, at lest that was our experience.

[HImom]

I’m really not close to either of these cousins. I have no idea about the family dynamics which have caused them to be so distant to their mom (leaving home to go off to college and rarely ever even return for visits in the intervening many decades). They both flew in for my dad’s 90th birthday party but ignored their mom’s 90th birthday and didn’t even visit her for it. Since I have very little relationship with the cousins, I can’t think of any “gentle” way to reach out to them. We did spend quite a bit of time with auntie’s S in his brief Monday-Thursday visit. He did say he’ll be back “soon,” but remained purposely vague. I think it’s heartbreaking for my dad on many levels. My dad’s closer to the S & D than I am. He’s really sad that his sister (aunt) doesn’t seem to want to try and has never wanted to exercise despite urging by her only friend and dad.

[lookingforward]

There are some things we just can’t control.

My mothers leg is badly swollen. Has been, off and on for 10+ years, and has not alarmed different docs. Now she called me today to ask if I think X is high blood pressure. (She’s very savvy about med issues and knows it is. Has been treated fof this, for years. I think she wanted permission to ignore it, just take another pill…) Her doc is away. So tomorrow I’m taking her to an urgent care, letting them offer the professional opinions on both issues. She hasn’t been sleeping much lately, is set to take the train west in 9 days. Of course I’m worried for her.

I find most people (others around us) want most things to be normal. It’s easier on them. Eg, for years, two closest friends, despite knowing enough about my challenging relationship with my mother, would ask nice things like is she coming for Thanksgiving or am I taking her 3 hours away to graduation or can they invite her to dinner. My mother, who they knew would refuse to speak with me for months at a time, who declared no interest in holiday family things, who has barely interest in my girls, and more.

This isn’t dementia, it’s personality, and you all know I would step up if something happened. But it’s sometimes hard for others to understand the distance, the history. Even our friends.

[HImom]

Yes, my aunt is caustic and very stubborn, even to those who are trying to help her. I’m sure she left a lot of scars in her relationships with her kids. My H just counts his blessings that my dad (tho somewhat challenging in personality) is by comparison SO much easier to deal with. I suspect the S is waiting from a distance to see whether he needs to return to find another placement for her, as it’s clear she can’t live alone at her home while she is wheelchair bound.

[travelnut]

HImom- hard to watch this, yet there are usually back stories in such situations. Change may be unlikely. Usually, there is a an aftercare/discharge planner at rehab facilities. By definition, their patients are “on the clock”- usually either a max of 21 or 100 days, depending on insurance. This person could be her uninvolved children’s/poa’s best ally by helping them to arrange a transfer to a facility with an appropriate level of care. They know the options, have contacts, etc. That is what I find ironic- the less you want to be burdened with your elder, the more important it is to front load the situation for the kind of care that both helps prevent small problems from becoming bigger and provides a built-in safety net when the bottom drops out, minimizing the need to turn on a dime in a crisis. With a little bit of luck and resources, this sounds like the moment for your aunt, who is now losing interest in eating and has already had a very marginal track record for tending herself at home. Hope it works out.

Preaching to the choir here, but in case it helps out someone new to skilled rehab transitions, thought it was worthwhile to mention it.

[HImom]

Yes, we feel that IF she survives to be discharged from this current placement, she will definitely end up being placed somewhere other than her home. It is painful and sad that no effort appears to being made by either of her kids to do ANYTHING.

[Cardinal_Fang]

Maybe you could gently suggest to your cousins that hospice would be a good placement. That might get their attention.

[esobay]

Tough situations. Hugs everyone.

I am back in ORE to take Mom to the Dr. She rallied a lot after the IV fluids and antibiotics. And had two days of eating a few bites. Today, they reported she ate nothing. I need to find out their plan for level of care. She is still dressing herself and got her hair fixed today. Looks a lot better, but I think it exhausted her.

I don’t know how long people can live on Ensure and Gatorade, but she seems determined to find out.

[HImom]

I’m deferring to my dad, who has more of a relationship with the S (my cousin) than the rest of us. My dad is the only family member who visits aunt daily.