Tuesday, August 5, 2014
When the family doesn't agree
The Mr wanted to go for spectacles sake, I didn't have a good feeling about it and predicted the outcome well before our arrival. I had no clue who this person was that was throwing it and honestly, I still don't. I've never seen this person or his "colorful" branch of the family tree in my life. As if that wasn't enough, despite everyone deciding it was better that my grandma (who hasn't been part of that family for 30 years) and grandpa not be told about it due to how difficult day to day things have become...they were told. Of course, the day they were told, she was excited and said she wanted to go. The Mr and I knew this was not a good idea because this was now going to turn into an excuse for my grandpa to get out and not necessarily focus on whether grandma was in good enough spirits the day of the event to go. Do NOT get me wrong, I know grandpa needs a break. I know he needs conversation with people who can have one with him. I know it's not good for him to be cooped up in the house all day long with her but the Mr and I have a very different idea of the kind of care she should be getting vs. what he is willing to/can give her at this point in his life.
My grandma was a proud lady. She liked looking a certain way every day which was really no more than coiffed hair, a little lipstick, a splash of White Diamonds and a nice outfit. Now? She's lucky if she gets her hair brushed, much less styled which takes no more than 30 seconds with a pick and a squirt of hair spray. She may be in the same outfit for a few days because he claims they don't go anywhere and don't sweat so there's no need. My aunt has tried to assemble outfits for her to wear on a hanger with a day of the week on it so he literally didn't have to think about what goes with what. He doesn't do it. He talks about getting her ready in the morning as though it is the greatest burden in his life to get her up for the day and down for the night. He talks about how he has to take her to the bathroom "every 10 minutes" and can't go by herself anymore yet any time any of us are there, she doesn't have to go as often as he has claimed. We were there 90 minutes for a visit and not one bathroom visit. We were at the family gathering for 90 minutes and not one bathroom visit. He tells us she never eats enough but she's gone up two sizes in the past two years and she always eats quite well in front of the rest of us. When they were away for the winter, he warned us all about how much she had declined and she could barely walk now and all of this horrible stuff and when she came back, yes, she was a little worse but nothing like he made it sound. So with all of the embellishments it's hard to know what is actually going vs. what he is telling us.
Sounds like a man overwhelmed having gone from not having to lift a finger their whole marriage because she paid the bills, did the laundry/dishes, fixed the meals and such to having to do every single thing for both of them, huh? Sounds like a guy who needs to bring in some reinforcements as his doctor had instructed and by that, I mean an adult 'babysitter' of sorts so he can go get a haircut or go out to lunch with the guys once a month. They can give you the same person every time so it's someone she will possibly come to know in some way. Does he do it? No. Why? Because he's being a stubborn @!&*%!
He thinks it's the next step away from 'putting her in a home.' I hardly see where having a qualified nurse/caregiver come into your home once or twice a week is akin to putting her in a home. But lets have our own pride and stubbornness prevail when it comes to the welfare of a woman who has taken care of you for 30 years and now it's your turn. Guess what, you're approaching your mid-80's, you've had strokes and have proven this is too much for you! The Mr and I seriously feel that he is sending her into a further downslide into the abyss than she needs to go. Their doctor has told him to do brain games with her (sorting cards/shapes which are sitting right on the table in front of her every day), he told him they need to eat properly but they go out almost every day for lunch and dinner to sodium laden restaurants and has said how important exercise is and to go for a walk every day. He doesn't do it. So instead they watch the weather channel or news all day. How stimulating. There is this great music therapy that could greatly help her but everybody just says "oh, he won't do it."
This is my grandmother!! For the love of God, DO IT!!!! My heart rate is so high right now thinking of the things she needs that she isn't getting. When the close family members who visit or see them with any regularity discuss all of these things, we all seem to have different stances on it. None of us agree that she is getting the care we'd like her to get while acknowledging he is doing the best he can. As far as the Mr and I are concerned, that is not enough. I don't see the harm in bringing in a nurse a few days a week to give him a break. I think his pride is detrimental to her overall care whether he sees that or not. My aunt encourages him to do it but doesn't take a very hard line with him and I think if she and I would team up and tell him he NEEDS to do this for her that he would actually listen. My mom doesn't think he's being stubborn, he just doesn't want to relinquish control to someone else. Everyone loves her...no one agrees on the definition of the best care for her. He's been doing this for close to three years...it's time to get on the same page and bring in some reinforcements.
If they had gone into assisted living, NOT a "home" when she was diagnosed (you know, when he had heart issues?) that she would know that as her home now. Then he would have the sense of security that someone was there to sit with her if he needed to go somewhere and they would both take their meds with accuracy. I mean, we can only assume they're taking everything they need to take but we don't really know for sure. That's what I suggested two years ago and everyone jumped on me like I wanted to throw her to the wolves. I tried to explain it was in that book they view as their Alzheimers bible because now it will be sooooo much worse when she has to go when he is physically unable to care for them both. Yes it's expensive but they have the money so that isn't the issue.
Oh and the family gathering? It was a BAD day. I mean, I've never seen her that bad. She was cranky, mean and kept saying she wanted to go home. She was hot, around loud strangers, she was hungry, she had people trying to engage her in conversation and asking if she needed this and that and she finally yelled at me and said "everyone just leave me alone!!!!" I looked down and said "okay" and she said "well, some people."
I understand though. I would want to bitch slap people if I was having a bad day and 6 different people were coming at me with questions I don't know the answers to. At that point they had been there for an hour and he should've taken her home. Instead he heaved like 'great' and we sat her back down and I said she needed to eat. The Mr noted she looked like she was going to faint. It was like for as much as people were paying attention...no one was paying attention to her needs. When a dementia patient is having a good day, you take those little moments of clarity, that peppier mood and the smiles. But when they're having a bad day it is very rare for that to turn around. You don't go from having a bad day to a good one. It's not the kind of day she should be dragged out to crisp in the sun in 86 degree heat and have her off of her eating schedule.
It is frustrating as hell because I know there is nothing we can do as far as having a say in her care. Whenever we suggest bringing someone in, we're dismissed or told "I know" but nothing is done to push for that to be done. If we are all venting about his attitude and the way he talks about her in a moment of frustration, we all have different interpretations of how it needs to be handled or even what it means. So the poor Mr has to sit and hear it from me. I just wonder how far/bad it has to get before my well-intentioned family finally sees our side of it. I try to reason with all of them because it seems so obvious to both of us that the issue needs to be pushed a bit with him but it's like...
All of our hearts are in the right place but no one can agree on how to proceed so nothing gets said to the person who needs to hear it.
I know some people will think I'm ganging up on my grandpa and that is NOT the case. I know that caregivers are exhausted of all of their time and energy and that is my point. Her disease is killing him. In order for him to be around longer to care for her in their home as she wanted, he cannot keep going at this pace especially when the care he is able to give isn't the best that she deserves. We all want to think only we can care for our spouses but I would hope the Mr and I would know when we need to get a little help if God forbid one of us ever faced this. Matter of fact, we've made that promise to each other because we don't want to end up resenting the other. We feel that frustration building up in him and he needs a support group...yet another thing he won't do. I want my grandma to have the best care with this stupid disease and if that means a helping hand by a qualified person, then so be it. I don't think that's too much to ask.
The best thing you can all do so you're not in a similar situation? Take time to get on the same page as a family as far as care is concerned. Make the caregiver agree early on in the process that when the family feels it's time to bring someone in to help them out that as long as it's affordable (in this case, his nurse would be FREE!), that they will do that. We all pitch in when we can but it's some of the day to day things or the occasional things that need to be addressed.
Sorry for venting, I just had to get it off of my chest and hopefully it somehow helps at least one family dealing with the same thing know they are not alone.
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