Tuesday, August 5, 2014

When the family doesn't agree

Well, we went to our family gathering last weekend.

It was...interesting.

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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  1. All I know is that if it were me taking care of you, or even the opposite of that, I would want either one of us to take a break and get some sanity as needed. There is no good that can come from burning yourself out too quickly and then that leaves both of us in a bad place. God Bless your Grandpa for doing as much as he does but when we all know that taking just a few extra steps would potentially make a huge difference in BOTH of their well-being, it makes no sense why he just won't listen to solid advice like that. That image nailed it. Because potato!

    1. If this situation has taught us anything, it's how we want to be cared for if, God forbid, either of us had to go through this. There is an attitude adjustment that needs to take place on his part as far as making every day tasks a learning experience like where the silverware goes when doing dishes, he can have her fold clothes to the best of her ability, etc. These things help keep her brain pathways stronger than parking her on a couch and letting her veg out all day until it's time to eat. It does him no good to sit on his butt as much as he does either when they could be out taking short walks every day like the doctor told him they need to do. *banging head against wall*

  2. Argh! I'm so sorry. As if it isn't frustrating enough to see your grandma deteriorate you have to worry about your grandpa and family disagreements and THEN the opinions of random people who may not have read your previous loving posts about your grandparents who think you are being too harsh on him. I'm so very sorry you have to go through this and so glad you have a patient, loving companion to provide a sounding board and occasional shoulder to cry on. I wish I could come up with the magic words that might make you feel better but I have nothing. So I'm sending a big cyber hug your way.

    1. It is very frustrating. I know that he is doing his best and it was fine when she was in the early stages but we are far past that. He has a bum knee that is bone on bone and has had back problems before. All I can think of is what happens if something happens with that? She doesn't know what to do or how to use a phone on her own anymore. A nurse to fill in the gap days when family isn't rotating in and out would do wonders for everyone.

      I will take cyber hugs all day, baby! I thank you!

  3. I hope someone listens to you. Taking care of my dad and his Parkinson's almost killed my stepmom. She is a nurse, but was still in denial about how bad he was getting. In the meantime, she was having chest pains that she was ignoring. By the time she agreed to have someone come in, he had pneumonia (and bedsores) and was days from the end. She wound up in the hospital needing a triple bypass and wasn't with him when he died. I'm glad she called me and I was able to go to Florida and be there for both of them, but it didn't need to be that way.

    1. Oh no, that is horrible! I think as spouses, this is the person who knows you best and loves you through your best and worst. We all want to believe we have the ability to care for our best friend/partner in adventures well into their golden years but sometimes we need some help. Grandma was in DEEP denial when she was diagnosed and therefore wouldn't discuss future care because she 'wasn't sick.' The only thing she made abundantly clear is no home. We are all committed to making sure she stays out of one as long as possible but not if caring for her kills him first. I'm glad you were able to be there for your Dad. I can only imagine how frustrating that was for your family to have to go through that with both of them. I'm sure as a nurse it's easier to objective with other people's family but when it comes to your own, you probably feel like you can save them. :-\

  4. I see both sides of this issue even though I'm lucky enough not to have to face your situation. Several of my family members are CNAs and have done home health care and respite care. The difference they are able to make in a caregiver's life is huge - grocery runs, haircuts, lunch out with friends/family, a nap or even a simple shower. Just giving over the responsibility for a few hours a week can make all the difference in the world.

    On the other hand, handing off the care of your loved one (even to a professional) is hard. You hear horror stories of elder abuse, and do you really know what that person is doing to your spouse while you're at lunch? What if she falls? What if the nurse is mean and yells? What if ....?

    I know your grandpa needs help, and I know he thinks he can do it all himself. If you could get him to join a support group that would help, but if he's not open to that you can't force it.

    Would he be willing to let a family member stay with her sometimes instead of a nurse? If you, your mom, and your aunt could each find a couple hours to spend with her each week would he feel more comfortable getting out and taking that much needed break? I know all of you are busy, but if you could manage that it could really help both of them.

    1. Trust me, we all fear the same thing. We've heard the stories of elder abuse, theft, etc. But for every one horror story you hear, there are probably ten loving, wonderful nurses/caregivers whose reputations are being questioned based on those stories. We have several very reputable home health care companies with glowing reviews that do very strict background checks and even offer to put cameras in for added security.

      Family does come over several times a week. We cook for them at times, we buy food that sometimes will get eaten, sometimes it won't because well, I don't know why. There's no good excuse. We don't want them eating out at restaurants all the time. My aunt has them out to her place once a week for dinner in addition to stopping by at least once a week (usually more). These breaks are not enough. This disease is too much for him to handle on his own and even if every family member said they were going to pitch in, it's not enough. We have no problem setting up a security system with a few web cams and let the company know up front the nurse WILL be watched. We need him to stay alive if he wants to honor her request of not going into a home and that means getting additional help, whether he's ready to face it or not.

    2. I agree with another layer. My family is dealing with a similar issue. My family member brings the ill relative to her house about once a week for dinner and takes him home and puts him to bed 3 - 4 hours later. It gives the caretaker a break and gives the patient a break too. Unfortunately I'm far away and can't offer local support, but I do go visit and clean while I'm there. That's something else the caretaker can't do/doesn't have time to do but I can. My ill family member goes to adult daycare. Has your family checked into that or is it available where they live? Grandma wouldn't have to go every day, but she could go a few days a week. They offer stimulating activities and she'd be around others with similar problems.
      It's extremely frustrating when you know they deserve better and better care is available but you can do nothing about it.

    3. I've looked locally for adult day care and haven't found anything that unfortunately isn't attached to assisted living or a mental care facility. He is SO against anything affiliated with a 'home' that he won't even consider it. I'll see if I can find something, maybe through a church or even see if the Y has something or can refer me somewhere. What is the most frustrating is all of the research I do being kind of dismissed like "we're not at that point yet." The Mr and I look at each other like "are you serious!?" We're teetering on that border. This disease has progressed at lightning speed. That hope we were given in the beginning that the meds would slow things down? Psssht, never happened. If you'd have told us 3 years ago we'd be this far with the disease, we'd have said no way. I'm just waiting for that day when she takes that turn to being irritable all the time. If that is the kind of thing he's dealing with every day, that's when it could all just go straight to hell and quick. Sigh.


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