Wednesday, April 13, 2016
From bad to worse
*This post covers some very raw emotions regarding our family's battle with dementia. Please try to understand that this disease takes so much more than just what the person suffering loses. It can destroy families, it alienates friends, it changes caregivers and their personalities. I share these glimpses into our reality so that if, God forbid, you should find dementia touching your life, you can know one scenario of what could happen. Also to help develop empathy so if you know someone who is going through it with a family member that you can better understand their journey.*
The other day, I was arranging a get together with my mom. After our plans were solidified, she informed me that Grandma fell twice. Once in the shower with both her husband and a home health care worker and again at the store with the home health care person. My mom, her sister and her nephew all went over to their house to tell her husband it was time to seriously increase her home health care. He agreed to have someone over Monday through Friday. I don't know for how long but they are meeting with them this week.
Because I'm not "in the trenches" with this disease at Grandma's request and my lack of ability to control my emotions, I rarely state my opinion where her care is concerned. I tried to earlier on or as it progressed but it became evident we were not on the same page. Sometimes when you're not on the same page, you have to step back and just pray on it for the sake of not dividing the family and your own sanity. But because it was brought up, I typed up a response, ran it by the Mr and asked if I should let the floodgates open. He gave me the go ahead and said there was nothing nasty in there that anyone should be upset with.
I first told her that I was very relieved to hear they were increasing the care. (It's needed to happen for well over a year.) I also told her that at Easter when he was at the table with just us, Grandma's husband said he thought it was about time for a rest home for her. We told him it was likely time and that we were okay with that. (We weren't sure if he was trying to feel us out for a reaction or not and we wanted him to know we supported that.) I told my mom that I felt like at this rate, HE was going to die before her because of what he is choosing to take on then where would Grandma be? I can't tell you how many visions I've had of him passing away on an in between day where he would be alone with her for a full day before family or health care people came and there she'd be, sitting next to him in a pool of God knows what between them. I mean seriously, I think about if I got the call right now that he died, she needs immediate care...this second. I told my mom that needs to be considered because you want to put her in a place everyone is comfortable with, not what place just happens to have room for her because you're forced to put her there due to his passing. Mom was worried about putting her someplace because what if she sits in wet Depends. Well, I have news, the Mr and I are about 80% sure she already does. A few times we've smelled it and there is no urgency to change it. If that happens when people are around, imagine what happens when there's not. You couple that with caregiver burnout and it doesn't make for a good situation. I'm *not* accusing him of anything but I'd be lying if I said it doesn't keep me up at night sometimes.
Mom said she was very surprised to hear about him talking about a nursing home to us because to them he is adamantly against it. So I don't know what game he's playing there but everyone needs to get on the same page. Mom is making appointments at local nursing homes to tour over the next two weeks. I am glad to know that and hope they find something that makes them feel comfortable . She said they don't want to put her somewhere until she is bedridden but given her legs barely work any more, I think now is the time. When I replied, I told her if she was surprised he was talking about rest homes to us, she'd be real surprised to hear that he also told us he was going to put her in a home and then go away for a few days, weeks or longer. I told her I didn't know if he was trying to get a reaction out of us but all we said was he needed to take care of his health too and needed a vacation. She didn't really address that part but I can tell you that when people start talking like that...they are done. He has complete burnout from trying to take on everything, refusing professional help up to this point and such.
What makes it hard though is that he is constantly complaining about caring for her and is on a loop about it. They hear it every time they see him and then when the holidays roll around he will go on a loop to each person to let the rest of us know what a burden caring for her is. At Thanksgiving, I had to leave because I heard him raising his voice in frustration at her for an accident she had. I am furious that he would allow it to get this out of control when he has all of the resources to make sure she is well cared for. We are very grateful for the care he gives but he's been falling short from day one by not listening to the doctors or taking her diagnosis seriously until it was too late.
I told mom he is part of the reason that it was so easy to book a place out of town for the holidays this year because listening to him complain non-stop for 3 hours was not going to ruin a fourth Christmas in a row for us. She said it would likely be the last Christmas with Grandma before she's in a nursing home. At first I thought she was going to try to guilt me into cancelling our holiday plans but thankfully she didn't. Because for the Mr and I, we had our last Christmas with her about 3 years ago. Every Christmas since has just been a steady, painful to watch decline into pain, disorientation, infant like behavior and more. Honestly, I think she will be in a home way before the holidays. My mom feels the same about Grandma's husband and his incessant need to have recognition for all he has chosen to do on his own. Obviously we are all thankful for what he does do but the few times we are all together as a family do we need to hear it 15x (to each person) and be constantly reminded of the hell we're all feeling? Mom tolerates it slightly better but she resents his attitude as well.
Think about how would it feel if all you heard about your mother is her husband blathering on and on about how every day is a bad day, listing every single thing he does and waiting to be showered with recognition every single time you see him? What really stinks is that the person I have known him to be since I was a young girl is no longer there. What's worse? We've seen his true colors and some other instances where people have had issues with him in the past now ring more true about him and where his priorities lie. What good is saving money for your old age if you're not going to use it to get your wife quality care? Care that she expressly told us she expected to have should either of them need the money if they got sick. I remember that conversation so vividly in my head that every time I think about how she expected to have good health care and hasn't been getting it, I feel guilty for not just going off on him and asking him what the hell his problem is.
I know that if I went off on him, I would never stop. The list of ways I feel he's mishandled her care are just too long for one small outburst. I know the rest of my family feels my distance (though I think they just attribute it to me not being able to handle her situation) because I make it a point never to talk to him for more than a vague sentence or two. I know he feels it too but won't ask. I don't trust my emotions not to totally override my rational side and end up banned from being able to pay my respects when Grandma dies. It goes that deep. So letting mom know how I felt as far as the nursing home (as well as providing her a few links to some I liked) as well as my feelings where he is concerned made me feel better. It's still not everything I would love to say but it's enough.
For my own sanity, I am going to write a letter to her husband letting out every ugly thing I have thought. I will seal it, keep it for the right time...and then burn it. I have tried to justify that he's doing the best he can but he's not and when I think about it, I get in a such a shaking, ranting fit that it's now affecting my health. The Mr has expressed concern over how upset I get and I don't like ranting over and over about something I have no say in. I just have to pray that the right thing is done by her and it sounds like wheels are in motion to finally get her the care she has needed for a long time.
How do you handle not being on the same page as family regarding a loved one's health care?
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