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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  1. There are at least some cracks in the walls that were put up from a standpoint of how closed they all were before to the idea of putting her in a care facility - so that's progress I suppose. It's just a shame that they weren't open to it when it would have mattered most and potentially could have made a difference in the quality of life and the length of time she could have been in a better mindset due to having professionals helping to make sure she had more structured exercise, meals, etc.

  2. No one wants to put their loved one in a nursing home, period. Making the choice to do it is agonizing. It has happened for our family 3 times at various levels of crisis - when a decision is forced. The easiest admission for our family was when my great uncle went and was aware of what was going on. He died February 3rd and had Alzheimer's and had spent almost 5 years in an assisted living facility and was in a nursing home 1 week recovering from surgery when he died.The falling is the worst. My uncle fell 4 times just in the month of January, he fell countless times over the past year. His last fall - out of a chair at the table when getting up from lunch - fractured his hip. He'd also fractured both wrists in the past 2 years. Because his mind was gone, he wouldn't remember to use a walker or remember why his broken wrist was splinted, so he tore off the bandages.
    I encourage you and anyone in your family who will go to find an Alzheimer's support group to attend.

    Perhaps her husband doesn't want to put her in a nursing home, and hasn't wanted to, but now sees that the level of care she needs is too much for home. His hand is now being forced. Nursing homes are looked at so unfavorably, but you are correct that the same things that go on their happen at home - unchanged diapers, drooling, food on their clothing. Getting old sucks and isn't for sissies!

  3. Our family had this issue with my uncle who died from Alzheimer's Disease so I can relate. My other uncle whom I see regularly has Dementia and is in a nursing home. He originally moved to the semi-independent apartments but after having two falls it was time to move him to the more secure units. It was all about research, research, research and interviewing numerous places to find what would be best. This is an excellent facility he's at now (to the tune of $6500 a month, but so worth it) and there's a couple of things that have stuck out in my mind that I'll share if it helps with some tips.

    One, sometimes I call ahead when I'm coming to visit and sometimes I just show up. At no time has he been soiled, unkempt, etc. His room is always clean, his laundry is always done, and he is clean (he fights them on showering so I know it's not easy for them). The staff also recognize me for showing up consistently and I'm amazed at how many people I'll see that know him and have stories about him.

    Another thing I paid attention to when we were going through this and I told my mom to keep an eye (or nose as it were) out for is when you walk into a facility do you smell urine right off the bat? When I was in hospice and would go to facilities it was glaringly obvious which ones were really nasty, and the smell of urine from just walking in the door (where there are no clients) is a very bad sign. On the flip side, if a place smells like it's been over-bleached or very chemically smelling that's another red flag. If the clients are being well cared for and aren't left to sit in soiled diapers, then that smell won't permeate anything. Sure, there's plenty of accidents that happen, but if they are cleaned up quickly, then it's evident in how the place smells. Where my uncle is at it looks like a retirement community and the inside is very well kept with plenty of activity rooms and physical/occupational therapy rooms for rehab and to keep clients active. He lives in the Alzheimer's section and it is just as nice as the independent section, which is another good sign.

  4. I hope that the rest of your family really is willing to have your grandma go into a nursing home. I know that they have all resisted so far, but if her primary caregiver is finally ready hopefully everyone else will not only follow suit but encourage him in this choice.


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