Parents caring for the parent support thread (Part 2)

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My mother has had a really hard year. Last May she was diagnosed with breast cancer and went through chemo, radiation and then a double mastectomy. She was doing better and instead of PT they recommended she return to her Stretch and Balance exercise class at the church (really, it is about five or six 70+ year old ladies walking around the gym so not really a class). Last Thursday she fell and hit her head. Off to the hospital for 5 staples in her head. They did a CT scan and found blood so decided to observe her overnight. She fell with 2 nurses helping her and fractured her hip and pelvis. Her head is fine!

Now we’re trying to get her to the rehab floor, but she might have an infection. Never ends.

Her dog is on a hunger strike and won’t eat, or eats and throws up. He wants his momma. The cat is snarling at everyone.

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So sorry, Lindagaf and SOS for your losses.

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Just wanted to add I understand the guilt from the certain sense of relief both that the parent is not suffering any longer but also from the conclusion of the incredible pressure and unending worry of care. I was shocked that I felt those feelings after months of 24/7 in-home care for my dear dad. Everyone was saying “you must be devastated at the loss” - yes, but there is more to it. Take care.

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@twoinanddone unbelievable


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I am just glad to have my DH back after he has been with his parents 840 miles away - with only short trips to me from mid-Dec to March 7 return. Transitioning his mom to skilled care was a longer process due to Covid and then her H dying in Dec- who she was going to room with at skilled care. Between her dementia and only daily evening phone calls with her H, she was already along the way on being parted from him. Then she had a lot of family attention with all 4 of the sons there before their dad died, and all there before she went into skilled care – she died of natural causes 16 days after going to skilled care and 5 days after Hospice/signs of dying- her congestive heart failure and poor cardiac output, with her dying in her sleep. She had time with all her grandchildren and 4 great grandchildren.

MIL was grasping at straws to stay in her home, with the ‘solution’ of my DH staying there 24/7 to care for her. It is a lovely skilled care place too - but Covid restrictions are really hard on everyone.

I have 6 more months of work before retiring - I work in a good skilled care/rehab facility, but it is demanding and stressful work - I hired in under a really excellent and hard working nursing director and assistant director – having interviewed with them, I felt good about my investment of time and energy with the work at hand. Lots of documentation.

Many families (just like H’s) do not realize how an elderly person can be doing pretty well and then it all crumbles – in part it is denial and in part it is just having a superficial picture that everything is fine, or they believe their loved one when they say everything is fine. As those on this thread know, in the trenches is tough - emotionally, physically, and how it affects the other parts of one’s life.

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I am upset. My mother had COVID Dec. 31st and was in bed through the first week of Feb. She had her second vaccine 4 days ago. She is dizzy, out of breath and moans and gasps a lot. (She has dementia).

I got the bright idea of getting the PT whom we have always loved, to help her recondition and that would be a pair of eyes in the facility for me. It is hard for me to tell what is going on aside from my two window visits/week and 15 phone calls/day.

The PT is frustrated because it is hard to get my mother out of bed. She moans and gasps and I am told she is anxious. The aides have similar difficulties, that is if they try, and only one does.

The facility and PT wanted to medicate her on gabapentin (as I said before) and her cognition always tanks on that. I asked the doc to discontinue it until we could figure out what was going on medically.

To me, the primary problem is medical (COVID sequelae). For a 94 year old who already had heart/lung/kidney issues I would imagine there is some damage. The flapping moaning gasping reaction to being forced out of bed for PT makes sense if she is weak, dizzy and short of breath.

Well now they are telling me they want to send her to a geriatric psych. ward. I have a feeling that if I say no, they will make it a condition of her remaining there.

Right now the memory care facility that I spoke with wants to evaluate her status first.

So a very old woman with COVID and other medical issues and dementia, gets upset and hyperventilates when forced out of bed at 10:30 am and they want her on a psych. ward? I just want a doctor to examine her and evaluate her breathing, heart and so on first before deciding that this is entirely behavioral.

The facility isn’t even willing to say that anything medical is going on at all.

I am feeling scared. I am still not vaccinated (I have been sick and had to cancel) so it is hard for me to take my mother to doctors but I am going to have to.

I am cancelling PT and my mother can stay in bed, and eat all her meals there if she wants. That way she won’t trouble anyone. I will call hospice for help rather than fight so hard for her to get well.

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This is heartbreaking. You’ve gone above and beyond caring for and advocating for your mom for so long. I’d want a doctor to check her out, too. I hope you can get your vaccine soon so you can have better access to your mom. No real advice, just hugs and I’m sorry you both are going through this.

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My mother called at 4 am gasping and begging for the hospital. She said she had been up all night. The assisted living nurse was with her. When I talked with her and she stopped gasping, her breathing was better but she complained of “head,” “chest,” “my body.” Oxygen 97%.

I think she is reacting to her vaccine, and my brother agrees with me (yay). I think she is not capable of understanding what she is feeling and gets scared.

I finally agreed to ambulance and just talked with hospital. I had a COVID test yesterday and cannot go in. I called the ER and asked for a chest CT, told them she has dementia and anyone can call me anytime to explain the situation.

I was considering taking her to the ER anyway as soon as I could. I wish I was vaccinated! I think an MD might help educate the assisted living on COVID sequelae as well as effects of a second shot on those who have had COVID. At the same time, at this point, I want them/her to have something to use for panic attacks.

I wish I could be with her. I have always been with her in the ER.

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ER doc called: EKG changes and extreme anemia which can also account for breathlessness
they are doing a blood transfusion. CT of lungs and head are pending.

This nightmare of hearing from everyone that it is “all behavioral” may be over though if breathlessness persists she will need training on how not to gasp etc.

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Main message: Everyone who is symptomatic after COVID should be checked out. Including those with dementia!

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I’m glad you have some answers @compmom. Prayers your mom gets some relief after the transfusion.

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She is admitted and called me and sounds 100% better!!!

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That is so great to hear, compmom! So hard to advocate from a distance and so often the elder’s complaints are discounted and chalked up to ‘psychological.’ Good for you hanging in there!!

When my dad w/dementia was transferred from a hospital to a rehab, the rehab wanted to put him on a psych med as soon as he got there because he was anxious and saying loudly & a little angrily “What’s happening?” A completely reasonable question when shipped into a new place! I told them “no psych meds, ever” and he felt better once he got acclimated. Hope your mom continues to improve!

Best of luck and positive thoughts your way.

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Hi @compmom I’m so sorry to hear what you’ve been through for these last couple of days, but really glad to read that your mom is doing a lot better. I think you were right to try and resolve the medical issues first!

I will say that we had a good experience with my mom being placed in the psychiatric ward after she was admitted for UTI (which was causing behavioral issues in addition to medical ones). Of course, this ward was specially designed for patients over 55, so the nurses were much more skilled at understanding dementia patients and were organizing engagement activities for the patients, which I doubt they would have done in a traditional ward. Maybe if this happens again, you can inquire as to whether your mom’s local hospital has a similar setup.

For now, let out a sigh of relief!!! :grinning:

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My mother was in the geriatric psych. place in our area a few years ago. She had serious kidney failure and they were not taking care of it so I had her transferred. While there she was on two meds and walked into the shower with clothes and shoes!

I just asked the nurse if my mother was sedated because she sounded so happy. The nurse said no. I said, well then, it is just pure joy! My mother loves the hospital.

I am picking up things and going over there this afternoon with face shield. I am not vaccinated but they said I could come. Thanks al!

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Good luck, @compmom! I know how exhausting advocacy is.

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I am glad things seem to be working out for now for you @compmom! I will say that over the summer, the isolation really got to my mom and her behavior got very aggressive. I finally agreed to let her get evaluated at a geriatric psychiatric unit of a local hospital. First off, “geriatric psychiatric” really means “dementia.” There are no people experiencing psychosis or other more dangerous things.

She was there really so they could start her on a med like Depakote which needs to be done under observation, so they can’t just Rx it to be given in memory care. Long story short, she found the proper med and went back to memory care and was in a much better place, more calm and engaged with activities. Just mentioning so people don’t automatically dismiss the idea of psychiatric meds for their elders, if they are indicated!

Does your mom have anything like Xanax PRN, for moments when she might be panicking? That may be useful too.

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The point with my mother is that she had a serious medical problem that was dismissed in favor of a psychiatric explanation, which at this point might have killed her,

We have experience with a geriatric psych unit in the past and they do great work. And not knocking meds but they would have masked the real problem.

My mother has had a blood transfusion and iron infusions and the MD’s are going to either find a cause of her extreme anemia (which explained her gasping breathlessness, dizziness, weakness and refusals to get up), such as internal bleeding, or we will do hospice.

I am considering filing a complaint. What went on the last two weeks with the AL professionals, who are not supposed to be diagnosing, is horrible. And people with dementia should be listened to (and me too).

ps you all know this but always fun straightening out the med list at hospital, right?

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@compmom, it does seem to be too easy for people working with seniors and see them as as going downhill eventually so not much effort is made to determine if there is a fixable reason and a temporary downturn. There also seems to be a rush to medicate in dementia, not that there are not really good reasons to medicate, I am all for helping a person who is losing their mind not to be anxious, and how could the person not be anxious when they are aware, at some level, of their confusion, but it makes sense to rule out underlying medical causes, too, like UTIs

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It’s hard to describe the desperate gasping of my mother. The nursing director rolled her eyes when my mother approached the window visit, moaning. Then the nursing director said something to my mother about her book and turned to me and said “see, she stops when I distract her.” I don’t need a lesson on “redirect” and the nursing director’s goal was to invalidate my mother’s suffering by saying it was hysteria. That is only one moment of many.

I just talked with my expert contact who leads a group and her first reaction was “lawsuit.” These two weeks go far beyond the normal just thinking someone is going downhill. My mother was desperately ill and only got belittled for it, as did I for being so concerned. The net result was dangerous.

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