Tuesday, July 5, 2016

What does it take!?



Last week we took my aunt for her first paddling lesson.  We were so excited to be able to share this with her because we knew that she could benefit in so many ways if she liked it.  She not only is a caregiver for Grandma but I think she takes on a lot with her mother in law and there has been a lot of stress at her job.

She did really well.  She lucked out and had much better conditions than we had a few days prior with my friend.  We got to a shallow part and she switched boards with the Mr to a bigger board that was more stable.  She stayed on it a while and I could tell that while we were gabbing she was losing focus and at this point if she went in, it was going to be a long kick back to shore.  I told her to let us know if she wanted to kayak and she said she was about to that point.  So we hooked up the seat and she got down and we paddled for a while longer.  She did really well and was talking about how she could finagle getting one for herself because it was so peaceful.  Even if she doesn't, we made it clear she could come out any time with us.

I had prepared a dinner that I heated up and wrapped in foil and used some of those casserole hot pads to keep warm.  So when it was done, we had a picnic on a blanket by where we docked.  While we were on the water, she did talk about her frustration with my Grandma's husband and his being cheap where her care was concerned.  You guys know I am always very careful voicing my opinions on that subject now so I just listened.  I guess even her son kind of voiced his frustration with him after being called over to help get her into bed when she was on the floor and couldn't be lifted into bed.  I just kind of shook my head agreeing and I also told her I outlined to him how Grandma's care could basically be free due to some financial stuff that happens yearly and he was appalled that it wasn't being done.  It sounded like she was at the end of her rope with patience with Grandma's husband.  So it was nice to give her a night away from thinking about all of that crap.

We stayed until sunset and on the way home, we stopped at a store then came home and unloaded our vast amount of crap that comes with taking three vessels out, got things situated and headed straight for a shower because the water was particularly gross.  (I don't even want to think about all the crap that stuck to her when she went overboard!  HA!  I just hope she closed her mouth when she went in.)  We come out to a message from my panicked mother (who can barely walk herself) that grandma is on the floor, won't get up and she and Grandma's husband can't get her into bed and can the Mr come over and help lift her?  If they don't hear from him, they'll call 911.

Okay, so the people taking care of her on this night of the week are two people whose knees are shot to hell and have no way to physically move her.  Then if they can't, the Mr, who can't even lift 15 lbs over his head during a strength workout is expected to lift 90-100 lbs (IF the two others are lifting half of Grandma's weight) of dead weight!?!??!  Of course the Mr said he was going to do it and called since it had been 15-20 minutes.  So he called and did they call 911?  No.  They called my aunt when she was 3 minutes from home.

My blood BOILED.

So I finally just let it rip on (virtual) paper to my aunt.  I've never really discussed my stance on this with her so I guess I took her frustration as a cue that maybe I could at least say my peace on the matter.  I told her while the Mr doesn't mind helping when he can, we just cannot risk not only his own health with his injury lifting dead weight but risk hurting her as well.  Thankfully a good friend proofread what I was going to send and pointed that out and I didn't even think about my God, what if he or ANY of us dropped or hurt her?  We wouldn't be able to live with ourselves!  I recounted to her the many times we had to put up with her husband basically mocking her in the beginning by talking about her like she wasn't there.  She would know what he was saying and sometimes she would yell at him for trying to make her look like a fool.  It was something that got on all of our nerves but no one ever said anything.  We'd all say "we KNOW" and make it very clear that it was fine if she repeated herself but he just had to keep playing some kind of martyr and remind us all of what he had to listen to all day.  I told her that is one of the reasons I cannot and will not be in the same room with him anymore and if I ever confronted him on it, he'd probably try to have me banned from the funeral.  I told her of a conversation we had with Grandma and her husband about a year before she was diagnosed and how she expected that the money they have in the bank would be used for either of them in their old age if they got sick.  He tried to dismiss her but she made it very clear, in her very Grandma way, that no, that is what it was there for first and foremost.  I told her I felt like she needed to know that and how Grandma expected that money to be spent.  This aunt is the one that Grandma's husband listens to/respects the most so I don't know what I expected but maybe if she puts her foot down, he'll finally listen.  I don't know.

All I know is I put it out there.  I kind of called it "Grandma's Last Stand" in my head because it's the last thing I can do to not just put in my two cents on my feelings for him so they know why I'm not eager to spend time in his company anymore but to say "this shit is ridiculous and she expected more!"  I made it very clear I was in NO WAY criticizing the way she or my mom were caring for her because I know they aren't considered primary decision makers for her and thanked her for being in the trenches but I felt like she needed to know.

The response I got was not angry at all but firm in the belief that she is not on board with a facility and will continue to push for as much in home care as they can possibly get him to agree to.  A facility will only come into play when she 'gets bad enough.'  I should forgive him because he's "family."  Last time I checked, you don't choose money over your spouse in a time where she needs it most.  It was implied I should be helping and "roll with it."  You know what?  I said my peace and I'm washing my hands of it.  I am not telling her that Grandma asked me not to be around her anymore if she ever got to the point of not knowing who I was and to give her some dignity.  I will only do that if there is some confrontation and I pray it doesn't get to that because I just don't have it in me.   If I look in my heart and mind, my conscience is clear.  I have tried to advocate for Grandma only to get shot down at every turn in her decline like I'm some kind of monster.  Those suggestions were only made because of a book they told us to read!  So I kind of thought that was the 'rule book' we were following.  I guess not, despite all of it making perfect sense.

If everyone gets pissy that I am not planning to enable her husband to continue to be blind to the care she needs, then that is their issue, not mine.  I'm givin' it up to God because I can't take it anymore.  I believe a promise made to a Grandma who was scared to death of what awaited her even though she was in denial of her situation is way more important than if I was disowned by the rest of my family.  I feel that strongly in my loyalty to her.  I've asked God, and spiritually Grandma, for forgiveness if I'm making the wrong choices but we all have our own feelings and perception of the situation and as we all know, perception is reality.  I said a prayer that whatever is done going forward is done in clarity and for her best interest to those involved.  I asked to continue to have a clear head where our differences are concerned and to not hold issue against those who are actually trying to do right by her because in the end we all feel the way we do out of love for her.  Well, most of us.

So to any of you going through this miserable, ravaging, effed up disease that aren't on the same page with family...hold strong.  Advocate for the person in the best way you know how, even if it isn't what others think you should be saying or doing.  Try to keep forgiveness in your heart for those who truly deserve it and disagree with you.  When others tell you that you should forgive what you consider the unforgivable...make a promise to one day accept that they made their decisions and now they have to live with them, just as you do with yours.  If you don't buy into the "forgiveness is for yourself" crap, then don't but don't let that hatred consume you if you can help it.  Have faith that somehow karma and whatever you believe in will eventually take care of things.  Remember the good times with the person.  Don't allow this disease to rob you of those memories too because that person has already had theirs robbed from them.  Find someone you can rely on when the times get tough and overwhelming.  Find a person who might know about the situation but isn't so close to it that they can still give you objective advice with a kind ear (or eyes).  Try to remember there is no right way to get through this and how you react may not be how others will and you have to accept that.  It's not necessarily wrong, its just different...and that's okay, even if it doesn't feel like it to you.

So I go forward.  Apologetic to the Mr for keeping him up until 1:30am the night I got her response with a physical reaction that took 30 minutes to calm and a mental one that took 45 minutes to calm. Apologetic to Grandma in giving all I am capable of giving, even if it is only a promise because she understood something about me that few people in my family know about or care enough to remember.  I'll share that with you tomorrow.

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12 comments:

  1. You spoke up for Grandma and if she could know, she would know, that you did what you could but you are not in control of this situation. It's unfortunate that the people who are in control have blinders on and cannot see reality, perhaps because they are too close to it, but I believe in the end what matters most is that you stuck to your guns on Grandma's behalf and she will know that someday.

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    1. I try. I do believe they are too close to it to see it from our perspective since we're not in the weekly rotation. I keep reminding myself everyone is trying to do keep her out of a home which is what she was afraid of most. But her day to day definitely needs to be upped.

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  2. Wow, I was so hoping for a different response from your aunt. It seems her view of when it "gets bad enough" is more about when your aunt feels it's bad enough for herself, as opposed to looking at it from Grandma's point of view. That is a real shame, because she has the ability to have some changes made. But as you said, you spoke the truth, and from a place of love, and they just refuse to have an open mind and consider other possibilities. It's easier for them to remain doing what's comfortable for them and they will dig their heels in no matter what. You can absolutely feel 100% at peace with what you wrote and your stance on how you feel. You are honoring your Grandma and that's a foreign concept to the rest of them. You've prayed about it, and handed it right over to God because there's not more you can (or should) do. Your Grandma will absolutely know that you stuck up for her, so no worries there. She knows your heart, so even if she can't communicate it right now, your DNA is a part of hers, so she knows. They shouldn't be shocked when you don't go to certain family events because of "him" and your hubs is not to be called upon to help, when they know the ramifications are too high (and they should be calling the proper healthcare people to begin with!!) so they have absolutely no right to complain about any of it. You did right by Grandma and that's what matters most, so hold your head up high about that and don't let them try to bring you down. Plain and simple, they just don't get it and they don't want to. Reality is too hard for them to face so they are trying to keep the bubble going for as long as possible for their own comfort. That's on them, not you. xoxoxo

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    1. I was too but I know from conversations with others that she was not on board with a home per grandma's wishes when she found out she was diagnosed. I think if she'd been able to see the toll it was taking, she may have made certain provisions about the amount of in home care it would take to not put so much burden on those involved. If nothing else, the Mr and I have had LONG talks about what we expect should GOD FORBID we ever be faced with this ourselves. In home with strict diet, exercise and brain games daily, music therapy and all recommended supplements. Adult day care when either of us needs a break and if it starts getting bad, we go into assisted living together. I try to look at it as a gift she gave us to have conversations we may never have until this.

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  3. Ugh, it just makes my blood boil reading this. This is borderline elder abuse, imo. Is there a local aging agency you could talk to who could possibly point you in the right direction to get her help - whether it be looking into a lawyer ($$ I know) or someone how could offer additional resources and be able to look at it objectively, say a counselor or mediator?

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    1. Trust me, my aunt is doing everything possible to get her the care she needs. She's talked to all agencies and has taken serious steps recently to get her in home care upped. (She's now considered in hospice care.) I understand her not wanting her in a home as she's very concerned about understaffing issues and doesn't want her sitting there needing attention and not getting it. I think to them it needs to get to a more combative stage maybe? I don't know. Right now it's just more a matter of who is able to lift this dead weight when she decides she's going to plop on the floor and not get up. She did mention a lift so I'm just praying if they insist on keeping her in home, they go that route to take the physical burden off of any of us who just can't do that. My hope is now that hospice has been brought in and more things are covered, it will be incentive to bring in the people who can get her ready for the day and for bed so he can have a break more than just 3 days per week. Trust me, if I even REMOTELY thought there was elder abuse going on, I'd call the Dept of Aging in a heartbeat. Thank you so much for your concern and having our backs!

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  4. When your Grandma shows up at the ER with injuries from falling and the staff starts questioning family members with a suspicion of elder abuse then they will change their tune about getting more help or moving her to a facility.
    It happened to my family. Relatives that would never, ever hurt her were furious at the thought. Elder abuse is serious and continuously falling could be considered elder abuse. She will hurt herself staying at home.
    I'm so sorry this is happening in your family. Once this occurred in our family it changed the way we all look at care for our elderly family members.

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    1. You are very right and I'm so sorry your family had to go through that. Thankfully this is nowhere near a regular occurrence, 3x that I know of but for ME, that's enough to need a backup plan. She has brought up a lift and I think she's pursuing this option. Thank you for relating your experience and if I can find a way to bring this up without getting blasted into next week, I will definitely do so! I think she'd be the same and would be furious at the mention of it but thinking from a hospital standpoint, they see if far too often. :-(

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  5. Praying for you too sweetie. So close to what we're going through. Thank you for your outlook, information, and your genuineness.

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    1. You're welcome and I'm so sorry you can relate. It is very difficult when all family members are not on the same page. You want to do what the person wanted but the Mr just read an article tonight that shed some light on long term care from Money.com and the last thing it said is family helping with long term care should not even be an option. In the short term yes, it can be helpful but we're in year four, I believe...it's time. Sigh. Message me if you need an ear (eyes) LOL

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  6. My heart goes out to you, your extended family and most of all, your grandmother. I have worked in eldercare for over 20 years, and what you are describing is something I have seen many times before. Families rarely agree on what needs to be done when a family member is diagnosed with dementia, and there is so much stress involved, not to mention fear, sadness and grief, that everyone's nerves are on edge and tempers get frayed. Everything you have said is something I totally agree with. Of course your grandmother needs to have more outside care coming in to help if it is the stated goal to avoid a long term care facility. Sometimes family members are being cheap (I have seen that way too many times to count), sometimes they have a martyr complex, and sometimes it can just be a matter of fighting for control over their ailing family member. I don't know what more you can do at this point to make things better for your aunt or your grandmother or mother, and you do have the right to protect yourself from the stress of this situation. I know your grandmother would not want to be the cause of so much stress and struggle in the act of caring for her. She sounds like a lovely person who loves you very much.

    Sometimes I will make the comment that when it comes to eldercare I have "seen it all", but I know I haven't. I have, however, seen some really stressful situations. If it helps you feel any better, I have also seen really bad results from transferring from insufficient home care to really horrible care in a facility placement. I'm sure that is one of the fears that plague your aunt, causing her to take so much on herself. The one thing I advise the families I work with is that there is no perfect solution, and in fact no solution that even begins to solve all the problems associated with dementia. My bottom line on dementia care when I am asked in my professional opinion what the best option is, is that well assisted home care for as long as possible is probably the best course. Emphasis on WELL ASSISTED. A family trying to do it all, especially with family caregivers who have health issues or mobility issues themselves is just not workable. I know you see this, and not being able to really change the situation is rough. I wish you and your family good luck. Walking this road is one of the toughest things in life that anyone will ever have to do. Until a family faces dementia, I don't think they really have any idea how hard this is.

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    1. Thanks so much for your perspective as a health care worker whose in it and knows what the families face and how it can divide them. It should be mandatory that after a diagnosis that patients must make a follow up appointment within 2 weeks to give their docs a directive of how they want their care to go forward. Maybe if docs told the patient, "it COULD get to the point you don't know how to use the bathroom or you may be afraid of or not know your family anymore. This is a family disease and while it's scary to think of those possibilities, we need to know your wishes through every stage." I think having some sort of direction from a doctor would be so helpful because grandma was in serious denial she even had an issue so she reluctantly listened to him meds wise but no support groups or anything like that.

      I am all for *well* assisted. The question I posed to her was okay so if he dies tomorrow (quite possible- he's older than her!), what happens to her?? Now you're in a position of what has vacancies over this is where we think she'd like most. That didn't sink in. It was a "we'll cross that bridge when we come to it." *Bangs head against brick wall*

      Thank you for all you do to help give families help and perspective as they go through this crap arse disease. You're a true angel.

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