Parents caring for the parent support thread (Part 2)

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I did. Funny, Mom kept trying to delay the 911 call, for any reason. She was still trying to get him to stand up and go to the bathroom, then everything would be just fine. She couldn’t give up, still embroiled in the crazy.

But I’m with him now, took an ambulance, emergency room, waiting to be admitted to the hospital. I took my Mom home and told her not to worry about anything, he’s in good hands. This has gone pretty smoothly, far better than expected, though he swore at the nurses, and told them not to touch his weenie when they catheterized him.:grin:Some things never change.

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Thank you for the update. It isn’t easy, for sure.

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I am glad he is getting the help needed. I know how stubborn this generation can be. Hugs.

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So glad you are on the scene. You’re a good daughter! It’s never easy but you can definitely make a difference. I found that my dad pissed and moaned a lot about his loss of autonomy, but his relief at not having to be in charge made him at least a little easier to help.

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My friend’s husband is in the hospital and for the first 3-4 days wouldn’t do anything to help himself (do the breathing exercises, sit in a chair, walk!). Wouldn’t listen to his wife, but when Nurse Ratchet told him if he didn’t do the breathing exercises he’d go home with oxygen, he listened. When a friend told him to sit in the chair, he listened.

Now he’s being released and they are concerned about covid and not letting anyone into the house. I yelled at friend and said there are times when you just have to weigh your options and take precautions but she needs help and people need to come into the house to help with his care. She’s going to end up in the hospital if she keeps running around doing everything for him.

She had a fit when I said he’d have to go to rehab if he couldn’t walk. She said 'those are in nursing homes, he’s not old (well, he’s 73) and I don’t want him in there on shut down." She calmed down a little when I said there was rehab at the hospital.

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Hoping your mom and dad are doing ok @busdriver

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My mother is not getting out of bed a lot of days. On phone calls and visits she moans and cries. She says she doesn’t feel well “in her head” but her assisted living is always skeptical and blames everything on anxiety. The last time they suggested psychiatry she landed in the hospital with anemia, which explained her behavior.

I just sent a phone message with her crying to my brothers and the nursing director at the facility. I have requested blood tests for next Monday, and MD appointment next Wed.

I am at a loss. Her facility has quite a few COVID cases (4 staff, 3 residents so far I think) and it is a little scary going in there since I have lupus, But I hate my mother being alone in this state. Right now I wish I lived with her but I am physically not able to do it.

Has anyone else experienced a parent taking to bed with mysterious decline in well-being? She tested negative for COVID. The weird thing is that maybe twice a week she rises at 4pm to get her gin downstairs, She still doesn’t feel well but manages to get there.

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They’re hanging on there, @momoffour, thanks for asking. It’s been quite a week. I’ve been so busy, I’ve actually lost a little weight because of lack of time to eat (it’s okay, I could definitely lose a pound or two)! Man, I am knee deep in the process. What a learning experience.

Dad has been in the hospital since Monday. His colon was twisted up and he needed large numbers of enemas to get rid of the stool and a procedure to untwist it. Not sure when he’ll get out, but he’s doing good and has probably lost 25-30 pounds already (mostly from his stomach, as he was full of massive amounts of feces, I will forever have nightmares). But he’s well taken care of, talkative and happy, except when they try to make him walk or change his diaper, then he swears profusely at them.

The hospital social worker said that he may not be eligible to go to rehab, since they think he might not be able to take instructions. But he can’t go home, I guess the code words are that “it is not safe to go home”, because no way can my mom take care of him now. We thought we’d have a couple of weeks while he was at rehab to figure this out. I visited him today, and they got him to sit up, but he refuses to try to stand up and walk. It’s not that he doesn’t understand, he gets close to it, but he’s scared. Scared to fall, scared to try, I guess. The PT said that he can physically do it, no problem. But if they don’t send him to rehab, that’s just like giving up. I told them that I haven’t been able to find a facility yet, we just started to look. A memory care place would give him PT, but not like a rehab facility would. I am advocating strongly for him to get rehab, but I understand what they’re thinking. Doesn’t seem like they’ve given him much of a chance yet, though.

Mom seems onboard with me taking charge. She was terrified and negative yesterday when we toured care facilities. I think I found the solution that makes her happy today, though. I found a memory care facility where they do everything for him, seven minutes away from me, 14 minutes away from her. If she chose, she could move in with him, at her leisure. First facility I looked at, an Aegis facility, was very nice. But the cost for the two of them living together (my mom requiring no care), is about 160K per year. They could afford it, but that’s crazy expensive, and the other place I found is far cheaper. Wow, this is all moving so quickly!

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@compmom well, I would get out of bed to get my coffee or wine, even if I felt poorly. One does have their priorities! There’s always a hope that it will make one feel better. Sure, it might be anemia again or lack of vitamin D, but it sounds a lot like depression to me. Maybe anxiety too. I know absolutely nothing, but I wonder if a therapist would be helpful? I always think to do all the bloodwork and if nothing particular is amiss, maybe a therapist could help with counseling and/or medication?

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@compmom- any chance your mother has a UTI? They can be rapid onset and asymptomatic, generating cognitive problems and fatigue. I have empathy for how hard it can be to tease out variables when baselines are shifting for other reasons. I seem to recall someone here reporting difficulties with collecting urine samples quite awhile ago, not sure if that was you.
Best to all who are navigating complexities against the backdrop of a pandemic surge.

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@busdriver, no I am 100% sure it is physiological and that the crying is related to how she feels. As I said, this has happened before and assisted living was dismissive and told me to get psychiatric help, but she ended up in the hospital for 10 days with two blood transfusions. Her dementia makes it impossible for her to articulate what is wrong. She complains about dizziness, breathing, “her head,” and her colostomy which involves a huge hernia that makes her look pregnant with triplets.

She is feeling helpless, I am sure, and she is alone a lot of the day. I always wish I lived with her during these times but I live in a small one bedroom apartment and have back fractures and just can’t handle it. I am going in today despite being a little scared of all the COVID in there.

She gets plenty of Vitamin D and I have never heard of low Vitamin D being symptomatic in this way. @travelnut UTI is something to discuss with doc but I see no change in cognition, which isn’t great to begin with, and no signs of psychosis.

She also just had an invasive squamous cell cancer removed on her leg. She has congestive heart failure, an enlarged heart, an aneurysm in her aorta, and continuous atrial fibrillation w/faulty heart valve, among other things. COVID last January affected her lungs. Kidneys are bad. Anemia could be from kidneys, GI bleeding, or from the heart valve issue chewing up red blood cells. We are way past chasing causes: she is almost 95 with dementia.

I am pretty savvy medically, but this has me stumped. I’ll wait for blood tests.

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@busdriver11 keep fighting for rehab. We had to do that for my dad. I’ve gotten quite good at fighting. :cry:

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My mother, who has dementia, went to rehab and I quickly returned her to assisted living. Rehabs have physical and occupational therapy for a couple of hours each day and then otherwise you are in bed. I felt it was healthier to be in her facility where she was out of bed, dressed, and walked some, and had a PT three times/week. Your Dad may actually be better off not going to rehab: at least that is a possibility.

For memory care, I found the facilities that were dedicated to memory care only were superior. The memory cares in facilities with assisted living was geared to those who had “failed” assisted living and seemed more for liability issues for the facility (wandering, falls). In contrast, the memory care only facilities were more positive in focus, with all staff trained in dementia, all activities geared to the varying levels of dementia, high participation rates, and the ability of staff to persist in helping a resident find a way to cooperate.

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The hospital/social worker certainly has a list of rehab facilities for your dad to get moved to once his colon situation stabilizes. That could ‘buy’ you time until other things can get put into place - and your mom time to adjust. The conditions of rehab is to show improvement in whatever area (PT, OT, ST) - to stay as long as number of days showing improvement, and then it becomes skilled care/not covered by Medicare. If there is an open bed with an acceptable rehab, and if your dad understands that you want to keep him in a good situation health wise. He may not react well and you also have your mom to bring along emotionally.

You also need to consider the assets lasting for both of your parents - so the choices now are a bit critical - do not want to move them to aesthetically pleasing place but have to move later due to cost. Maybe your dad would understand rehab is just like cardiac step down unit - don’t need full hospital but need enough for the ‘step down’ from hospital.

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I agree that the dad should be allowed a chance at rehab to use the rehab days allowed. It sounds like he might do enough there to manage some time before they say he is not progressing.

We were able to have my mom stay in the hospital longer because she needed at least one assist and could not go home safely - mom was in a head on car accident and was not 65 yet – after getting a few more hospital days, my sister took a week off work and I flew in to take a week off work for her recovery at home. IDK how her insurance would have worked, and the push back on the hospital was enough to keep her there longer. The hospital gets paid by diagnostic related grouping and specifics - so they get paid the same if someone is there a shorter number of days. Rehab wants to operate at a full level (excluding the staffing issues that Covid may be placing - that has been a whole new paradigm).

One is operating with different facility interests (outside of good patient care which is the expressed interest).

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We have found it critical to talk to professionals about which facilities and hospitals to use. The difference in quality is staggering. As much as we love my dad’s independent living facility, more than one person has told us to move him if/when he needs assisted living. This place doesn’t have good quality AL apparently.

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Compmom, my Mil complained of her head feeling ‘big, like a hat is too tight’ when she had fluid in her brain ventricles.

Wow, that’s a lot of stool. This isn’t how you planned to spend retirement, but thankfully you are close.

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Gosh, compmom, with all those physical ailments, I’ll bet you’re right, it is physical. It could be related to anything. What happened to my dad wasn’t uncommon, he had a big stomach like your mom. It seemed really weird, because he mostly eats health food, never drank, and he had this huge beer belly. Turned out it was volvulus colon, which can happen more often to elderly people who are very inactive, particularly in nursing homes. I wonder if it’s something like that for your mom? Good for you for following up on your hunch!

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Thanks and sorry for your Dad. My mother already had a totally blocked colon with a horrendous 5 weeks in hospital, three years ago, and has a colostomy. Because her intestines were so swollen at the time of surgery, there was a large gap when the swelling went down resulting in all of her intestines moving over to the right side, underneath her stoma. It is a huge hump with the colostomy appliance on top.

She did vomit a couple of times before this current situation so it is always possible there is infection or twisting or compression of intestines, but the vomiting has not continued.

Good luck with your Dad. Rehabs are good for interim periods when deciding what to do next and some assisted living and memory care have short term stays for post rehab.

I just read that hospitals are full of elders waiting for placement because some nursing homes aren’t taking new patients.

My mother has gone to rehab after the colostomy and after a broken pelvis. The first time she was near the nurses’ station and the place wasn’t busy and we loved it. I would go and have lunch and hang out. The second time she was far from the nurse’s office and they were busy. I arrived to find the colostomy bag had come off and she and her clothes and bed were covered with poop. I called for a nurse, no response. I tried to get an aide, no success. I cleaned it all up myself and redressed her.

In some areas they are very short staffed right now. Terrible. I hope you find a good solution for both short and long term!

ps we are not doing hospital anymore unless something is easily fixed…no pursuit of causes or diagnoses for the most part…she has been on hospice three times then improves and comes off

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@momoffour I suspect something like what you describe. My mother has vascular dementia which means a lot of tiny bleeds and she is on an anticoagulant as well. She says it is “her head” or “something about my head” and lacks the language to describe further. But I suspect we all lack the language to describe what she is experiencing.

It used to bother me that the assisted living staff dismissed everything as anxiety or depression but now I just don’t pay any attention and deal with the MD.

How was the fluid in the ventricles diagnosed? She is on two diuretics so I wonder if that would take care of that problem?