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AmyGrace Asked November 2015

This is the beginning of the end?

Mom is now in a nursing home. Although mobile and lucid enought to make it in assisted living, she refused to use a walker (and at 100, she is naturally unsteady). She had fallen several times over the last several months but this week fell and hit her head. Trip to hospital, back to AL disoriented and unable to walk without falling. The AL was wonderful, making arrangements for us to move her directly to a nursing home as they could not provide the care she needs.
So it spirals for Mom's sad downward spiral and no one can help her. She has always always been a cat on a hot tin roof, up and down up and down with absolutely no attention span or interest in a hobby, reading, even watching tv - nothing. (And I'm talking this has been the case for 50 years that I can remember. That is her personality, figetity, restless, only temporarily occupied by someone paying her direct attention, constantly, so now it is 100 times worse) She cannot walk without falling unless she is assisted with a walker otherwise she will fall. She fell in the hospital. She cannot remember what she has been told or taught for even five minutes (like "don't get up without help")
Mom's first night in the home (and they are wonderful to her) consisted of her getting out of bed or the chair every five minutes. They put an alarm on the bed and chair. Finally they had to move her next to the nurse's station because it was constant all night. While I was on the phone with the nurse, the alarm was going off.
I am so sad. I feel so bad for her. She is confused, she is unhappy, she wants to "go home" but she can't and my sister and I can't help her because she doesn't understand or remember. The AL said if she comes out of it, agrees to use a walker so she won't fall , they will re-evaluate to see if she can come back. But, I know in my heart she will not. We tell her that to give her encouragement, and she temporarily understands and agrees to try, to eat, agrees to use the walker so she can go back, but five minutes later she forgets.

So, I now understand why nursing homes sedate or tie residents in their beds or chairs because there is eventually no other option for someone like Mom. There seems to be nothing they can occupy her with that will keep her in one spot. The other choice is to let her get up, wander and immediately fall or to pay someone to velcro themselves to her 24/7. We are already paying $11000 a month!
Its awful to say, but we are both praying this emotional pain will be over quickly for her, and for us.
I imagine others have gone through this too. It is so painful both emotionally and financially. When quality of life is this bad (whether the pain is physical or mental) a person can live too long.

freqflyer Nov 2015
AmyGrace, I don't know what to think now. I thought it was the beginning of the end. Now my Mom is starting to eat according to my Dad and his daytime caregiver, the caregiver is now feeding my Mom at the nursing home. So that gives Dad hope that Mom will walk through their front door like nothing had happened. So sad to hear that because I know that will never happen.

Mom has days where she tries to pull herself into an upright sitting position and ask to readjust her pillows every 15 seconds..... this can go on for the hour while I am sitting there with her. That is so exhausting. We are sitting in the common room where there are other elders that appear to have dementia and it is so sad to see what is happening when we get old... most are in fairly good shape, it's their mind that is so confused. Or if I visit Mom late in the evening, she is in a deep sleep... good to see her resting. This is no way for her to live her final chapter :(

freqflyer Nov 2015
AmyGrave, oh my gosh, I get the same thing when I turn too quickly. For me it happens once a year and that's enough. The doctor did try meclizine on Mom. And I was on that med after I broke my shoulder as that fall messed up my vertigo a bit. I heard there is something one can do with their head to shake those calcified pieces but I am too chicken to try it.

Ah ha, good question about how long do the child live who have stubborn parents. I know my parents have shorten my life :P

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AmyGrace Nov 2015
ff: Our mothers, cut from the same cloth! It sounds like your mother had a bout of vertigo. I've had that on and off if I turn over in bed wrong. It feels like I'm in a spinning room - its awful! Its from little calcified pieces breaking off in the semi-circular ear canals.
Stubborn! The doctor and nurses say that is a trait that helps people live so long. I wonder what the stats are of how long their children live as a result of the "stubborn long lived parent"!
Mom did use a cane the past few years, but I think it tripped her up more than helped. And she didn't use it in her apartment or room and forgot it half the time. She never had a fear of falling, denied (or didn't remember) falling, except for one incident years ago which she blamed all her old age problems of that fall, claiming she was perfectly fine until then. She has been in denial for 20 years.

freqflyer Nov 2015
AmyGrace, does your Mom have a fear of falling now? My Mom goes into panic every now and then thinking she's falling even though she is secure lying in her bed or in her recliner. She still has that sensation. I agree with just letting her sleep, and letting her go sooner than later. This is really hard on my Dad seeing her this way.

Her fear of falling is now less and less, but oh my gosh the first 4 weeks she was in delirium big time, reaching up to the ceiling with her arms and her legs were like she was running a marathon.

And oh that stubbornness, it finally was Mom's downfall. She refused to have Caregivers, which we tried for 3 days before she asked them to leave, and Mom wouldn't use her cane inside the house.... and refused to even think of using a walker. She didn't want people to think that she and Dad were getting old.... HELLO... was she waiting until she was 115 before she considered herself old?

golden23 Nov 2015
(((((Amy))))) I agree that the use of drugs is preferable to agitation, anxiety or any other negative frame of mind or behaviors that are potentially dangerous but it is sad admitted when things come to that point.

Like yours my mother has not been a happy person. Recently she admitted to being depressed, I trust that antidepressants will help though she has refused to take them before.

It is very sad seeing the decline that more and more reduces their quality of life to mere existence.

ff - sorry abut your mum too and (((((hugs))))) to you.

AmyGrace Nov 2015
Freqflyer: yes it happens so fast. One day Mom was zipping around, being stubborn but in control of herself, now she is gone, with flashes of herself for five minute intervals.
Thanks everyone. This is so painful to watch. They have Mom bolstered in bed and a fall mat on the floor, so, even after a day they seem to know what they are doing. I called to check if she was still on the Zoloft, which she is. The change in venue has been traumatic for her obviously. (Even moving from IL to AL, after 10 months in a beautiful post assisted living facility, she did nothing but complain and obsess on her furniture left behind and ask how much it cost to stay in "one room with only a twin bed and dresser" (Of course that wasn't so - she also had a table and chairs, easy chair, lamps, end table, tv, kitchen sink and cabinets with a microwave and coffee pot. When we moved her from her house to the lovely IL ten years ago, she was still complaining about that up until we moved her to AL. But then, I can't remember Mom ever being happy wherever she is. She kept moving from one place to another for the past 40 years and never being satisfied.) I think they will probably have to ask the doctor to prescribe a mild tranquilizer for her. At this point it is better for her to sleep the rest of her life away than to spend it in a panic.

BarbBrooklyn Nov 2015
I'm so sorry, Amy. (((((((Hugs))))))

freqflyer Nov 2015
AmyGrace, when I read your post it felt like I was writing it... same issues with my Mom who is 98. Same fall, same head injury, same climbing out of bed/wheelchair, and same confusion about where she is. She forgets she can no longer stand up.

What the nurses are doing for my Mom is putting her in a Geri Recliner which is difficult for even us to climb out. We will find Mom at the Nurses Station, too. So far Mom hasn't gotten very far out of that recliner. The bed they have pillows bumper guards which also help, but I see the facility has fall mats next to Mom's bed so apparently she had tried to climb out.

It's been a balancing act with Mom's medicine to keep her calm but not too calm to zone her out. She is also on hospice watch because she's pretty much stopped eating two months ago after her serious fall at home.

So sad seeing Mom this way as two months ago she was like The Flash dashing around their home, especially when we brought in their groceries.... Mom didn't want Dad to get his hands on anything to try to help putting things away, as Mom had her first-in first-out inventory down pat.

Sunnygirl1 Nov 2015
AmyGrace, your story sounds familiar. Can you get her into a Memory Care facility? From my experience the staff there really seems to understand the dementia patient.

My cousin behaved that way, in regular AL. She kept falling and getting fractures and eventually went to a wheelchair. She stays in it now, except when someone is there to assist her transfer. Her legs don't really work to walk, so she no longer tries to get up alone. Her legs do work to propel her in her wheelchair, so that is a curiosity. Perhaps this is phase and your mom will stop trying to get up. I know I have seen that in other patients as well.

Have you tried medication that helps with anxiety? I tend to believe that much of the pacing, restlessness, etc., was anxiety and when she went on meds for that, she stopped being so anxious and fidgity. Once they are content in their skin, the out of control behavior tones down, from my experience.

I know what it's like to see that the loved one cannot focus and really has no interest in anything anymore. I try to make things pleasant just for the moment and treasure those times. A few things like banana milk shake, a piece of sparkly jewelry or a song on the radio are a few things that make her smile, although, I know she will not recall it in minutes later.

cwillie Nov 2015
I'm sorry to hear about your mom Amy. I agree that a person can live too long, so many of us here have loved ones who are simply existing with no quality of life any more. I myself have discovered that each new downward phase seems impossible at first but soon develops into the new normal. I guess we caregivers have to learn to adapt or we would all just run off screaming into the night... lol

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