Not really a question, more of a rant. But any thoughts and suggestions are appreciated!!
So FIL who was widowed a year ago April is in AL with dementia, He is miserable, refuses to socialize, thinks he doesn't belong there , refused care, yada yada. Finally is showering 1-2 times most weeks, last couple of months with or without help depending on his mood, but still does not change his pullup often enough and refuses toileting schedule.
This past month has expressed that he knows he is declining. He has been in the hospital 4 times since December with acute on top of chronic respiratory failure. This time he is also in CHF.
The man despises rehab and PT. The last time was this past April. And he did improve , but has been declining again .
Last night he said he does not want anything done , he is too tired. In my head I agreed that he is probably too weak for rehab and was thinking of palliative care in SNF.
Went to see him this morning and FIL was back to "denial" about his condition. He said the doctor said he needs to get stronger. FIL thinks that means he just needs a few more days before he goes back to AL. FIL just wants out of the hospital. He did seem better today, but I doubt he can go back to AL before going to rehab. I also think its questionable that he would do well enough to return to AL at all.
It is so exhausting for all (Including FIL), this back and forth every other month with the same chronic problems. At some point DH who is POA will have to make the call as to how much is done and when to just let FIL rest.
But when that is , is a tough decision again. It was much easier when he was doing more poorly and FIL himself saying not to do procedures etc. FIL is a DNR, which he is still adamant about.
Modern medicine keeps bringing him back from going over that edge, where we would all say for sure let the man rest. It seems so cruel to put this man through rehab again and again , just putting off the inevitable.
It gets complicated as well since FIL has some lucid moments. It would be much easier for DH to say "Stop , let him rest." if FIL was less verbal or less able to make wishes known. But his wishes are often unrealistic as he is not always aware of how ill he is. Last time FIL was very against rehab, but did it to avoid SNF. I doubt he remembers that he wasn't allowed to go back to AL if he didn't do rehab. We may be headed for the same ugly scenario , as he thinks he can go where he wants" so long as he pays the rent".
So now what? how many times does this happen until DH decides that FIL should just rest in palliative care in SNF no matter what he says? Maybe FIL won't be well enough to get back to AL, we will see.
Take two giant steps back, stop propping and they will step in to be the "bad guys".
I’m not being argumentative when I ask this .
How is not visiting FIL going to force AL to make any changes ? Isn’t usually the case that the family has to complain for a change to happen ? In general we always say make a presence , have the staff see you come , yada yada to get good care .
Im surprised they took him back this time . I thought they would say Memory care . They have it there. It’s not like they would lose a paying customer . It’s also the most expensive AL near us . I think they are too nice .
Should DH start complaining ? He’s too nice to them also. Doesn’t the squeaky wheel get oiled ?
You guys are nice. You seem to accept the situation for what it is. The unhygienic-ness. The stubborn -ness.
Perhaps they think this all is acceptable to you all?
Do you have care meetings? What if you showed up and said "he is living in squalor, we can't accept this any more. He needs a higher level of care" (on HIS dime).
What would happen?
My only experience is with a very cooperative mom and believe me, THAT was quite enough work. If she'd been uncooperative, I would have had no compunction about walking away.
I don't do abuse.
I’ll try again.
Not that my situation is like Mids at all.
But I also have very little power.
DH is letting this go on . The only time he says anything to them about it is if I pressure him and he doesn’t do it often .
Here’s the thing , DH grew up in a family that discussed NOTHING . I met my DH when we were 17. I know them well enough to know that all the men bury their heads in the sand . My in laws divorced about 30 years ago ,at her request . FIL was devastated . He married someone else a few years later .
My mother in law is a very overbearing controlling person. All the men including my ( high functioning autistic ) BIL are very non confrontational . The first time I met my mother in law , her first comment to me was very passive aggressive . I knew from the get go that I would keep my distance from her . I could write a book . To tell you how controlling she was , first she tried to get DH to dump me, then she threatened to not come to our wedding because we weren’t letting her plan it her way. Not to mention she wanted to name our children. There is so much more …….
Anyway to backtrack , My father said a very wise thing to me. He asked if I wanted to start off my marriage giving in to her or stop her now . DH and I eloped instead . To this day , MIL says she never got to go to HER son’s wedding . DH and I on and off went no contact with her over her interference while raising our kids .
FIL never said much. His second wife wasn’t much better . Now that he’s single , he’s using the passive aggressive and manipulation that he learned from his wives.
I am grateful that my DH has a better relationship with our own kids . He is like an acquaintance with his own parents .
Purrfect !
Bet that was a big red flag..
I was given a name idea - I took it as a *suggestion*. (I actually liked it but DH didn't go for it). Later there was surprise I had not taken the *suggestion* as a directive. Flag.
Then another rellie took offence because I had selected a name they *may* have wanted to use at some distant point in the future.. I am not a mindreader. (Also, unrealistic).
As you say, communication & control issues.
I will certainly have some stories for any sidelines in a film..
My daughter said she could never date a guy with the same first name as her brother . Which is unrealistic since he has a fairly common name for their generation . Well…. She is engaged to a guy with the same name ( on paper ) as her brother . But her fiancé goes by the shortened name . My son always goes by the full first name .
Update on our movie:
The little cats are really an essential part of the movie, so I’ve approved all their conditions: wardrobe with matching colors, separate dressing rooms, “no means no” (if they say “no”, we must adhere)…
OK, so that’s sorted.
Way, you’ll have strawberry lemonade.
I’ll get chocolate milk.
Ana, your cat will be lead cat.
Need, your husband’s line “I have reached the threshold of my pain”, will be used throughout our caregiver movie.
MD, in the movie, you’ll remind us please to get some good sleep, dreaming of little cats (who don’t insist on their rights).
(Enter: JAWS MUSIC)
My husband is very quiet. It’s always fun to see him use his ‘one liners’ on people! I adore his dry sense of humor!
Going to need that “ real drink” with my wings .
AL just called about setting up a consult for SURGERY for FIL for a hernia that the hospital found , and possible placement of a pacemaker .
The man says he doesn’t want to go to the hospital or have procedures done anymore .( Nor is he even a good candidate for abdominal surgery) . FIL told them that when he was in the hospital , which is why FIL went to rehab. Sheez. 😬🤦♀️
So now DH says not only do they not listen to POA for someone without capacity. They don’t listen to the patient either. The health care system ( business ) is just looking for cash .
Don’t do the surgery. One can live with hernia for many years. Danger is: strangulated hernia, more and more pain: but if it gets to that point, you’ll die anyway within days: you go to ER, they try to save you: 99% chance of dying. If he feels no pain (no-pain-hernia), then you can totally live for years like that.
Update movie:
Way’s drink has been changed from lemonade to a real drink (Sangria).
And I need two milk chocolates. Make that four.
Need gets gin and tonic.
Daisy (Way’s cat) will also get extra treats.
Also in the script, Way wins at Bingo.
Way also gets a chip which. I don’t know what that is, but she’s getting it.
(Enter: mysterious music)
I can’t remember the exact age but I distinctly remember my mom’s doctor telling her that she was no longer a candidate for any surgery after she hit a certain age.
Geeeeez, your FIL’s situation is one thing behind another!
I know that you and DH are ready to throw your hands up in the air and scream!
and a chip which .
His large bowel sits in the hernia enough to cause a backup at times . His stomach and intestines then get push up on his diaphragm causing the respiratory distress . He only has one and a 1/2 lungs working to begin with and they never expand well on a good day anyway because his torso is so compacted , he’s so stooped over from osteoporosis , his organs are all squashed . He has like hardly any torso and really long arms and legs . He looks like a praying mantis .
This bowel blockage has happened three times now in the past 6 months . The most recent time the respiratory distress made his heart overwork to compensate and caused congestive heart failure .
But here’s the thing . They give him mega laxatives to clean him out in the hospital . And he gets Bipap machine to give oxygen and help get rid of all the CO2 built up in his lungs . This last time was the worst because of the CHF and they couldn’t get the CO2 levels down , but finally did .
But when he goes back to AL they haven’t done enough to prevent the blockage again . They only give him senekot that I know of . They wait until he complains and then try to give him a laxative , by then it’s too late . He needs something stronger on a regular basis.
Even FIL thinks surgery is too dangerous and doesn’t want to go through it . He told them that , but his discharge insteuctions say to follow up with surgeon for potential surgery, so AL called DH .
These doctors try to keep fixing things . Everyone dies of something . My FIL probably die from this hernia at some point . He’s had the hernia a long time he says . I guess it’s gotten worse . FIL asked some questions about palliative care while he was in the hospital which is how hospice conversation came into play because most likely this will happen again . So he’s going to most likely die from not getting surgery , or he could die from getting surgery . FIL says he doesn’t want to risk having a long tough recovery that could kill him anyway . He just wanted to go back to AL and be comfortable . However , he hasn’t said ok to hospice yet either .
a chipwich , Is two larger chocolate chip cookies with vanilla ice cream in the middle like a sandwich .
Yum .
Everyone’s getting two chipwiches.
But wait, if I am having sangria. I’m changing my appetizer to guacamole and chips!
I don’t have a cat anymore 😞. Nor a dog. I do have a beautiful grand dog!
I love seeing all of the photos of the kitties and dogs.
FIL has a cardiologist appt on Tuesday . I truly hope they don’t talk him into a pacemaker that will only prolong his active dying phase when that comes .
If they do the procedure, and he gets a pacemaker/defibrillator, it's a simple visit to his cardiologist's office to have the defibrillator "turned off" once he goes into hospice. We did this for my mom. It was a non-invasive procedure, they just used a computer to send a signal to shut it off. Mom didn't even have to remove her shirt. It wasn't a requirement of hospice, it just saves the patient from being "shocked" at EOL; which, from my understanding, is more traumatic for family members witnessing it rather than the patient. If the patient/family wasn't able to get the defibrillator turned off, I believe hospice can provide a magnet that does the same thing (I'm not sure how that works, but this is what my mom's hospice provider told us).
My mom had a pacemaker put in about 18 months before she passed. I really don't think it did anything to prolong her life, honestly, and it didn't seem to make much of a difference in her quality of life, either way. She did have a bit of difficulty in the recovery with discomfort, but she had a rather low threshold for pain. She did have to go into rehab after as well, so if your FIL doesn't want to go back into rehab, that might be a way to discourage him from the procedure.
The pacemaker did nothing to prolong her active dying phase. I did ask the hospice nurses about it, and they said it wouldn't. Once the heart can't function and dies, no pacemaker can change that.
I found my mom's cardiologist was extremely reluctant to discuss hospice with my mom; he didn't want to be seen as "giving up on her" - those were the sentiments he expressed to me. But my mom was ready to be done with all of the poking and prodding and was quite at peace with hospice. She even rallied briefly when she first went into it; I think the relief of not doing the "treatment revolving door" was huge to her.
I'll be hoping for the best for you and your family when FIL sees his doctor on Tuesday. (((hugs)))
Thank you for that information . Very helpful. I believe care is so fragmented . The doctors do not look at the whole picture anymore . I’ve noticed a change since going through my Dads care years ago , when the dozen or so different doctors at least seemed to look at all his many problems ( cancer , CHF etc) when they considered his options.
Right now trying to convince DH he should be at this appointment instead of having AL take FIL and drop him off to talk to doc alone, ( then AL pick him up ) . I would go instead but will be away with my daughter. Uggh.
FIL should not be dropped off and left alone anyway anymore.
DH is really shutting down. If I can get him to go , the appt has to be changed to a different day anyway , DH can’t make it next Tuesday due to work things . So that in itself has him annoyed that he has to change that appt .
I agree with you about fragmented health care - that's the perfect word to use. Most specialists see you as a pair of lungs, a heart, a liver, etc. And it seems that basic communication between doctors is a thing of the past.
Not that this even comes close to what you're going through, but I have my colonoscopy on Monday...when I asked my gastro about my meds - what to take and when - he told me to ask my internist. My internist asked me what the gastro said. Ugh. It's like when you're a kid and ask mom for something and you get "ask dad" and dad says "what did mom say?".
Very frustrating, to say the least.
I seemed to think DH was on the phone once during a doctor visit instead of there in person , can’t swear to it .
Anyway , I didn’t even think about possibly needing rehab again after a pacemaker procedure . Also FIL has been saying no surgeries anyway. I’m just hyper focused on not having FIL be talked into something by a doctor that doesn’t realize that he’s refusing aggressive treatments for other life threatening issues anyway , so it’s futile .
And yes , have been hearing from many the situation that you have come across where the doctors pass the hot potato question on meds before procedures or surgeries. My DH also had that issue last year . I don’t understand why that’s happening .
DH just got back from seeing FIL . He told him about the appt . coming up . FIL says he does not want a pacemaker . He says no surgeries .
Very wise decision. Surgery is too risky.
(((Hug))) Way. I know it’s a stressful situation.
I’m still up in the mountains for a few days. Guess what? They sell chipwiches here! Thanks to you, I’m eating one right now.
Need, I hope you’re having gin and tonic. Way, I hope it’s a strawberry lemonade day (as opposed to a Sangria day).
Ana, your heroic cat will do many good deeds in the movie.
(Enter: heroic music, to be followed unfortunately by JAWS MUSIC)
Thanks.
Escaped to the beach with 27 yo daughter . First mother daughter( 27th birthday ) trip !! Should have done it years ago .
The beach is the one place on earth that can relax me . Sadly I no longer live on an island . I used to go to the beach on a whim to listen to the waves in all seasons. It’s very peaceful . In the winter, an empty beach at dusk , with a calm light snow is magical . It’s my church .