Hello everyone. I know some of you who have been here for a while. Remember my post about my mother, a hoarder who is addicted to pain meds and had a major neck surgery. She passed away last summer. A horrific two years of nine months with her in my life.
Now, her 91-year-old step mother has begun to need more assistance. And what has happened in the past few days is a prime example of how caregiving can really escalate. This is my late grandfather‘s second wife, who was 17 years younger than he is. She had no children of her own. She’s been managing well, at home, still driving still very active socially. She required a heart valve replacement, which was done yesterday. It went well until she came out of it and went into some sort of rhythm that indicated a blockage.
They had to go back in and do a pacemaker at 5 o’clock yesterday evening. I got her settled in her hospital room for the night and came to my hotel room. We are about an hour from where we live. So far she was passing all of her Neuro checks with flying colors. I’ve had some horrific experiences with my mother‘s tendency to get hospital delirium. My hackles are up.
So when we were going to get the TAVR procedure they basically said recovery was a lot like a heart Cath. So she had lined up to stay at home with her visits from her various 90-year-old friends to sit with her, her 88-year-old brother, and a few hours here and there from a paid Caregiver. She also has a housekeeper. But we are not prepared for this. Now she’s got one arm in a sling for two weeks, and strict rules about not lifting or using that arm much. I think this will affect her mobility, she will need help dressing, etc.
My day with her yesterday, began at 4 AM with a preop shower and Assistance for that, and did not end until 7:30 PM when I left the hospital yesterday. She is supposed to be discharged midday today. And now as an added bonus, we now have a pacemaker device that will have to be kept up with, appointments back here in the big city an hour from our home. I am overwhelmed. Not really sure what’s going to happen next. I was prepared to spend a few nights at her house, but I think this is going to be much much bigger.
sorry if I did not type clearly. It did not take 3 1/2 hours to get her in the shower. What I meant was, my caregiving day with her began at four in the morning when we had to do her preop antibacterial shower. And then we did the whole surgery process from 5:30 in the morning until I left the hospital at seven thirtyish that night. And normally in her home, and when she’s not preparing for surgery, she can shower independently. But we were in a different bathroom with a set up. She was not used to. And she had to really scrub with the soap and get her backwashed and everything. And right now, while she’s weaken from the surgery and has some incisions to watch out for, she requires assistance with bathing which both her aid and the home health aids will do
The short version is, I think this situation will be manageable. Yesterday I arrived at the hospital. She had already requested home health. Her mental status seems to be intact, except for one statement today, where she didn’t remember being walked to the restroom yesterday before we left the hospital. But she’d also had zero sleep the night before. But she really does seem exactly like her usual self, we co-managed scheduling several doctors appointments this morning.
I was not thrilled with the hospital. They had on her activity board that PT was to come and walk her. They never did. But I did observe her going to the bathroom twice, the first time with Assistance and the next time much more easily. I decided that since she was able to at least walk with Assistance we could manage.
Got her home around 5 PM yesterday. Once she got in the house with her cane, I’d say she had her usual level of mobility. She went to bed early and slept well and is fine today. Home health will provide a nurse, PT, and a bath aid. The nurse removed her groin access site dressings today. But so far as long as she can at least walk to the bathroom and her mind is intact, I think we can manage this episode. Her paid Caregiver that she already had is with her right now. But I also know this is just one crisis. At her age, the next is coming.
Someone mentioned POA. I am third on the list as POA. Number one is her beloved friend who used to be her neighbor but moved two hours away. Then I am, then her 88-year-old brother is. When she first approached me for help with this surgery I’d asked her to please add an alternate to her brother due to his age. The friend came and sat with us at the surgery and ended up being the one to sign for the pacemaker. But I could have as well in her absence.
I am guessing you are not POA.
If you are not POA legally you can not make decisions for her.
You are not obligated to care for her.
She can go to rehab until she can safely be discharge to her home (if that means she needs a full time caregiver for a while that can be set up)
Do not get sucked down this rabbit hole!
Don't take this on. Care at home for someone with her conditions will be a challenge for experienced, professional caregivers who go home after their shift. If it took 3+1/2 hours just to get her into the shower, she needs to be in some kind of rehab facility for a while at least. She needs 24-hour facility care. An aide coming in a few hours a day, some elderly friends sitting with her, and you doing the rest is not enough. Explain this to the hospital before you take her home.
You say that she had a plan lined up where she thought friends dropping by, a few hours from a paid caregiver, and a housekeeper was going to allow her to live independently at home. Did she just assume you would fill in all the rest?
Did you offer? (Big Mistake!) Please, Don't do it. You can't. This, as you rightfully predict, is going to be much bigger than you can manage! It's ok to say you can't do it. If she thinks her plan will work for her, allow her to try and fail when it doesn't. Don't be the hero who comes running every time she needs something.
Allow her to figure it out herself. She may hire more hours of paid caregiving. She may be ready to move to a care home. You do not have to be her default "plan" and you do not have to be her unpaid caregiver.
Tell her case manager that it is not a safe discharge, she does not have any support at home while she recuperates and insist that they get her into a rehab. She may have to agree to this, so you might have to have a hard conversation there. (Because of the expensive IV meds that he had to continue at home, no rehab/skilled nursing would take my dad. We hired home caregiving help—which was difficult and not a good experience for us. AND, I had to learn to administer IV meds three times a day, the schedule for which started at five am and we didn’t finish the last dose until after eleven pm. Exhausting and very stressful.). This is the deciding time for you to NOT become captive to caregiving again…..
I get the distinct impression that you've not learned how to use or say the word no yet. Am I correct?
You say that your step grandmother has the money to pay for her care so let her use it to hire whatever help she may need, and if you want to stop in every now and again to bring her supper or her favorite flowers by all means do that. But no where is it written that you have to be her hands on caregiver.
That is totally your choice and in your hands. So if you don't want to, start by just saying "NO." Try it you'll like it, I promise.
It’s been an interesting relationship I’ve had with her. She’s been in my family since I was one year old, 1972. I was not raised real consistently around her because my mother hated her father. And really in my earlier adulthood I was kind of in and out of her life. But these last 14 years or so we’ve gotten to know each other more. So it’s a relationship it’s not exactly like a grandmother relationship. She’s a great and delightful person, and I do love her. But I am pretty anxious that this is all been heaped on me. We haven’t gotten to talk about this what to do at home. She spent most of yesterday in and out of sedation. My hope is that she will realize she’s got to pay for more help. Again, neither of us knew what this would become if she ended up getting a pacemaker. She was told she might need one, but we did not realize the aftercare.