Parents caring for the parent support thread (Part 2)

Parents Forum Parent Cafe
3087

Just got back from a visit with MIL, and I’m pretty sure we’ll be returning soon. She is going downhill quickly now, and it’s clear that she is well into end stage congestive heart failure. She has gained a lot of weight, and it’s from fluid buildup. Last night, she sat in a chair instead of on the soft couch - we were able to see that her stomach is SO distended. She’s eating very little, she barely moves around, and she has other signs that point to the beginning of the end. Her hospice nurse will examine her tomorrow & do whatever she can to help make her more comfortable (she’s not ready for pain meds yet - I assume she will get diuretics and/or have the fluid drained, if that’s appropriate at her stage & with her being in hospice). H and SIL understand what is happening and are ready (as ready as one can ever be) for what lies ahead.

I have to add that I am so grateful for my SIL, who has been dealing with a mom who repeats herself endlessly, often acts like a child, and hates being alive. It’s tough on her, but she is handling it well so far.

1 Like
3088

I’m sorry @kelsmom. These things are hard even when you know it and they want to let go.

4 Likes
3089

Such a hard time for you and your family. Sending hugs. :people_hugging:

4 Likes
3090

Oh gosh, that’s hard to bear. I hope you and SiL can have some respite at times, even if it’s 10 minutes alone in the bathroom with a cookie. The last stretch really tests your strength.

Someone upthread made the comment that they didn’t want to have any regrets about the last days, and that really carried me through. I read to Dad when other people said he couldn’t understand, I made her favorite foods and drove the long way thru town to “sightsee” and lift her spirits, I held his hand when that was scary, and I have few regrets. So thanks to whoever that was that reminded me I would look back on the last days with a peculiar microscope.

6 Likes
3091

@greenbutton

I find @cinnamon1212 ‘s advice helpful, too even with my healthy family and friends.

2 Likes
3092

And my experience at the end was that even though I left (what seemed like) many stones unturned regarding what I could and should have done, time put it into perspective: in the end my dad (and my mom too, many years ago) knew I was there for him/her at the end. I was a good-enough daughter, just like I like to think I have been a good-enough mother to my own daughter. Time gives perspective, or at least it has for me.

11 Likes
3093

My MIL is from bionic stock. Her two sisters lived well into their 90’s, and they both hung on longer than expected near the end. That is most likely what will happen with my MIL. She is a mess, and she is near the end - but it may well be that she remains that way for awhile. She can sometimes still have her moments - we played a dice game the first two days we were there, and she beat us several times - but that is rare & takes everything out of her.

We unfortunately live many hours away, and SIL is about a half hour away from MIL’s AL facility. So she is the one who is really feeling this. H will probably need to make some quick trips down & back just to give his sister a break. We joke that as much as she wants to “check out,” her competitive nature won’t let her give up until she has lived longer than her sister (close to 99) … SIL says she (SIL) won’t make it if she does that! We try to find the humor as much as we can.

3094

I truly hope they are taking care of the fluid buildup. The guidelines for meds do differ between hospices. Some easy relief from diuretics can make a huge difference in quality of life.

5 Likes
3095

Lasix (furosemide) and spironolactone helped with my mother’s fluid buildup from congestive heart failure. She would not wear compressions stockings but keeping legs up also helped. She appeared close to the end for a couple of years!

1 Like
3096

Talk about bionic stock is some of my DH’s lineage. He has 4 great aunts that lived to 101, 105, 106, and 107. GF died at age 96 after they stopped extra medical care - he loved life and he asked to sit in his chair a bit longer that evening, and died during the night, peacefully.

More remarkable is how long others in their lineage lived, due to life expectancy with earlier generations. GGGM lived to 83 (died in 1917), next generation GGF died in 1939 at age 73, while GGM died in 1950 at age 85 - these parents and offspring lived in rough conditions during a smallpox epidemic and all survived - which included GF and siblings born between 1893 and 1910 (9 children).

DH’s mother/parents also had pretty good longevity, and had a sister that was going to live longer than the sister that she competed with – and she did so, with the one dying at 93 and the other at 94. His mom and another sister died at 92, another sister at 93, and one at 96 - she had completely come back from a stroke, but then with her Congestive Heart Failure, would not have been able to tolerate the aggressive treatment. Their parents, dad died at age 74 (1961) and mom died at age 83 (1974).

3097

Just talked to my sister, who was talking about the big plumbing bill my mother had. She acted like I was an idiot for not knowing all about it. I asked her “Unless one of you tells me something, how am I supposed to know what’s going on up there?” Message received, I think.

3 Likes
3098

Nicely done :slight_smile: I have also had to remind siblings that I don’t always know what they are referencing. Mom apparently had a scary day for minor reasons and naturally they don’t tell me everything…but I was so confused without context, talking to her. She has called me nearly twice a day since Dad died, and I guess everyone figured that was enough.

Has anyone here had financial POA for a parent who is otherwise competent? LS now shares Mom’s checking account (she panics about bills being paid or not, etc and asked him for help keeping track) and PS is handling paperwork for investments but every time a letter or phone call comes to her, she completely panics. Would POAhelp at all?

3099

Is that something you can discuss with her, about bills that LS is taking care of, and that PS is managing the investments? My mom had dementia, but LS (who also was PS) was taking care of things, and early on - I just talked with her about everything being taken care of and she could just relax. And she knew she had plenty of money, and things were going fine, so she relaxed. She had a full time/live in housekeeper, and LS/FS would be there multiple times a day (his house was a house away, and then he sold it and lived in mom’s house). There was a routine.

In some ways, other things gave mom a ‘routine’.

Hope this helps. Letters, she can open - and then leave for her son. Phone calls, just write down what the call is about (appointment, scheduling something routine like home maintenance, whatever). A way to handle, as she may be uptight/anxious about her memory slipping.

1 Like
3100

@greenbutton I thought the only way to get POA was if they are still competent to sign. I got POA when my mother was borderline competent. When her dementia progressed, her doc invoked the proxy which I was told also invoked the POA.

As a side note my mother fought me all the time about control. I dealt with that by telling her I was her assistant. I joked that I was once her administrative assistant and now I was her executive assistant.

I also offered to give her all control and brought a bag full of bills and tax prep etc. which predictably overwhelmed her and then she said I could do it. Then shortly after I would get an angry phone call about her checkbook being wrong. I gave her dummy checks and made sure nothing was ever mailed.

3 Likes
3101

Paperwork for POA has to be done when the person is still competent otherwise it’s a lengthy process to get them declared legally incompetent afterwards. POA won’t get invoked though until the person loses capacity.

But, having the shared account with a family member and someone else handling paperwork is a great. Those family members can also ask your mom if she would rather the mail and phone calls go to them. It’s easy to change that contact information.

3102

The POA discussion is very timely for our family. My MIL was admitted to the hospital last Thursday because of extremely severe abdominal pain. CT scan done w/contrast, which showed uterine cancer and enlarged lymph nodes. She had a lymph node biopsy yesterday and we should know results of that tomorrow (Wed).

For at least 10 years, my DH and his sister have begged their mom to set up estate paperwork…healthcare directive, POA, will, living trust, etc. She’s refused this entire time. DH had a mad scramble yesterday to get her to make healthcare directive decisions, designate a primary & secondary healthcare POA individuals, and have the signature witnessed by a person at the hospital who wasn’t the primary or secondary persons.

MIL has been loopy on opioid pain meds this whole time, so there was a short window to get all of this done yesterday BEFORE her biopsy, but when she was lucid. Case manager at the hospital had to be present for it. But DH had to run around the hospital to FIND the case manager.

ALL of that stress could have been prevented if she’d just set all of this up way ahead of time. It’s been kind of a mess. My DH & SIL are SO frustrated and stressed out from it all.

By Thurs or Fri, MIL will probably be transferred to a larger hospital that’s farther away than the one she’s in right now…oncologist spoke w/DH yesterday morning about it and said that for the “first round of treatment,” MIL will need to be an inpatient at the other hospital…which is a 2 hr drive from where we live right now.

Does MIL even WANT cancer treatment? None of us know right now because she hasn’t been lucid enough for anybody to ask her. DH is going there tomorrow, hoping to be present for when the doctor discusses the treatment options.

My MIL is 78. And before all of this happened, she already had a laundry list of health problems:

  • type 2 insulin dependent diabetes, 25+ years of poorly managing her blood sugar
  • diabetes-induced retinopathy and blindness
  • neuropathy in hands and feet
  • about 50% kidney function left
  • heart attack about 14 yr ago, resulting in installation of a pacemaker
  • gastroparesis caused by the diabetes
  • because of the poor kidney function, her skin is super itchy all of the time, which has now resulted in her having these open sores on her lower legs from all of the scratching. On one leg, there’s a 2" open wound that isn’t healing.

So will her body even be able to handle chemotherapy? No idea.

My MIL does NOT handle any kind of discomfort very well. I know what my own mom had to go through with pancreatic cancer and I’ve tried warning DH & SIL about how bad this is going to get, but it (understandably) isn’t quite registering yet.

For the healthcare directive, MIL designated my DH as primary and then a friend of hers (not SIL, MIL’s daughter) as secondary. SIL is, understandably, really upset about that. SIL doesn’t live in this state, but that shouldn’t matter. MIL hasn’t been able to drive for 5 1/2 years and has relied on her BFF to drive her literally everywhere during almost that whole time…she’s burned through some bridges before with now-former friends because she (MIL) is a little clueless and self-absorbed and doesn’t consider how her requests/demands impact the people she’s asking things from.

So this BFF is the person who’s designated as secondary contact on the healthcare directive.

MIL & the BFF have this weird codependent sort of friendship. BFF is about same age as MIL, is a former nurse, and suggested to MIL that MIL come to stay w/her for awhile so she could take care of her. Um…no…bad idea. But at the time, MIL was still lucid, not on pain meds, and able to make her own decisions, so nothing DH & SIL could do. Then the pain intensity went way up, MIL got put on pain meds by we don’t know which doctor (MIL has always been very weird & secretive about her medical stuff with us…won’t share anything until she absolutely has to…she even had retina surgery once and didn’t tell us until 2 months later), MIL’s pain level still was not manageable, and BFF said, “This is beyond my level to handle, I’m taking you to the ER.”

Meanwhile, our eldest daughter just started her senior year of high school 2 weeks ago, kiddo needs to find a new part time job, there’s college applications to begin, and all the normal stuff that goes with kids in high school.

I already told DH & SIL about a really excellent hospice facility in the area which a friend of mine used when her grandmother was dying. I think that MIL may decide to do 1 or 2 rounds of chemo and then will say, “No more. I’m done.” And then they’ll be looking for a hospice facility.

Under no circumstances will MIL be coming to stay with DH & I in our home. We do have the room for it, but she is too demanding of a person, too passive-aggressive, and too manipulative for our marriage to survive her being house-mates with us. Nor will MIL be staying w/SIL…SIL’s marriage is on the rocks (BIL openly cheats on her, that’s a whole other soap opera) and SIL’s house is too small to accommodate an additional person living there.

Having paid in-home 24x7 care for MIL is also not an option due to finances. So MIL will likely be moved at some point into some sort of facility. DH is hoping he can convince MIL to go to one in our area (different metro area than where MIL lives) so he can visit her more often. But DH & I both suspect that she will choose to remain in the metro area where she currently is so BFF “can visit me every day.” :roll_eyes:

Thanks for listening to my long tale of woe. It’s been a lot to absorb this past week.

3103

I’m so sorry!

3104

I am sorry, that is so frustrating & disruptive.

Your MIL has gotten this far doing things her way. You, H, SIL are doing best you can. Some circumstances cannot be helped, some pain cannot be avoided, but you are wise to plan for various scenarios. Still, try not to be too hurt if/ when your counsel may be set aside.

I am sorry your MIL is suffering and has serious health problems. So fragile.

1 Like
3105

Oh gosh, that’s so much. But if she wants to stay near BFF, there’s nothing to be done. Does she still drive herself? Live alone? At some point, medical people may not let her continue to do that, but situations differ. Our hospital palliative care liasion said 24/7 nursing care is , at this point in most places, entirely theoretical. The work to actually find that care is enormous, expensive, and usually fruitless.

As others here have said, hospice can be a godsend. I would have gotten my father to hospice sooner, if we were to do it again.

Hugs to you. It’s so hard.

3106

MIL lives alone. No longer drives herself since she’s legally blind as of 5 yr ago.