Wednesday, September 7, 2016

It's About Friggin' Time!

I got the news last week that my grandma's husband FINALLY took advantage of a benefit that hospice offers.  Once per month for up to 5 days if there is room available at a particular end of life facility, he can go through hospice and they will send a squad over to transport her there (due to regulations) and can get almost a one week break from care taking.

I don't know what the occasion was but he wanted to visit family for a day or two and decided to take advantage of the full amount of time offered to him.  I cannot begin to tell you how happy I was to hear this.  This is a facility that I researched and gets amazing reviews and it is soooooo nice.  A HUGE room with couches and chairs for family and even a small kitchen so meals can be cooked there if the family prefers.  She has HAPPY things on the TV and not that God awful depressing crap he has it on all day and each window opens up to green space for her to enjoy when she's awake.

I prayed with everything in me that he would see that a place like this is where she needs to be and also that he can still make sure she is getting good care while not having what is left of his life sucked down the drain by what he chooses to take on.  (Unfortunately this particular place is not a long term solution, it is truly for end of life which is why they offer this program for caregivers.)  I prayed that my family who visited her there would see that some places are not the horror stories they have chosen to focus on.  Unfortunately, after a talk with my mom, it has become very clear to me they will never, ever send her to a facility unless he dies first.  Well, he's about 10 years older than her so that is more likely than they seem to realize.

If nothing else, I hope that he will take advantage of this benefit on a monthly basis whether he has somewhere to go or not so that he CAN go somewhere for a short vacation if he wants to or to sit in the house in his underwear if he wants.  It's just important that he and the rest of my family that are in rotation are given some time off, particularly my aunt who he is taking advantage of because she's too kind to say no.  It would be nice if they had a space open during the holidays so that everything doesn't have to be schlepped over to their place and her routine and home thrown into a tizzy for appearance sake.  If he could just have her there over the holiday (that she doesn't know from a holiday to a Tuesday), he could actually enjoy the holiday for the first time in 3 years.  Actually all of the caretakers could.  Not even suggesting that one, I can only imagine the reaction but boy would it be nice to know she's being looked after properly so that any time we're together as a family doesn't have to focus solely on this disease.  (Like my birthday visit was...that was fun...not.)  I hope that doesn't sound rude to those who haven't gone through it themselves but it does make one dread family time once you get to the point she's at, hence our exit for Christmas this year.  (Hell every year if we like it enough!  Wonder if I just made the Mr start sweating when he proofread that!)

So while this could just be a one time thing, I really hope it isn't.  I hope he chooses to take full advantage of this opportunity they are allowing him when the space is available.  He doesn't need to have a reason why.  When the Mr fixed his computer last month, he told him that he needed to take care of himself because he was doing no one any good by burning himself out.  I hope that somehow sunk in.  I think everyone involved would benefit.  Sorry, no real point, just keeping people updated who have asked lately.

I hope you caregivers know it's okay to take care of yourself!!  Matter of fact, it's mandatory.  How can you be a good spouse, parent, caregiver, etc if you let your own health slip?  You can't be expected to take on everything and if you're trying to, you're going to fail.  The disease could very well kill you before it kills them.

If you are a caregiver that needs resources on what is available to you to help get relief, please go to Alzheimer's Navigator.

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  1. This is, finally, a step in the right direction. When someone is as stubborn as he is, we'll take it!

  2. That sounds like a really great place. If he has the option to do this every month, it would be great if he would. If he could even get on some kind of regular schedule with it, it would be even better. He does need the time off for himself, obviously the strain has been detrimental to him physically and emotionally. Even more, if your aunt (and other family) knew when they would be "off" duty they could plan breaks for themselves. It is a step in the right direction, and maybe he will realize that a nursing home is a better option for everyone.

  3. So happy to hear this news! I'm totally with you on this. My husband's father died of Alzheimer's and it's so hard on EVERYONE. Caregivers need that time and support to be able to take the proper care of themselves so they can continue to take good care of their loved ones.

    We took care of my mom at home - she died of lung cancer in 1993 - and talk about burn out....but we honored her wishes to be at home. That was the most important thing at the time. But it's so hard. God bless all the caregivers.

  4. Yay!! He FINALLY agreed to respite care!! It's an amazing service that hospice provides and it's specifically for caregivers (hence the "respite") and it's amazing how much people can get recharged from that because for those few days they don't have to worry about their loved one and can truly relax. I'm so glad this place is excellent and she has such happy surroundings there. It's definitely a positive step!


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