Old 11-17-2014, 06:44 AM #1 (permalink)
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Default Wake up call and hard choices

Three years ago my mom fell and broke her hip. She was 77, very frail, still working, and has had the use of only one arm and hand since the age of 4. My husband made it possible for me to go to California where I spent every day in the hospital or nursing home until I could get her out of the nursing home and move with her to my sister's home. He said "bring her home with you", and I did. While catching up on long neglected medical care we learned that she has Parkinson's. When the one year I expected to care for her day and night turned into three, he made it possible. We planned to care for her here for the rest of her life. Then ALS changed everything. I think I've known intellectually that I would not be able to care for both of them here, myself, but I've not really faced it. She's been progressing in her disease and has taken several falls. Friday we spent the day in the ER having her checked out from the latest. While waiting for exray results I feel apart. It hit me that I had left my husband alone, something I could not have done two weeks ago and will not be able to do in the future. Sobbing like a baby I told her that I can't do this. She already knew and had been expecting it, but it's so very hard.

I contacted my sister who immediately started researching assisted living near her home. I have such mixed emotions about that. We'd planned to keep her home for the rest of her life. Not only am I faced with what's to come with my husband, but I'm forced to renig on the promise we made to my mother. ARGH!

Last night one hour after I finally went to sleep she got up to use the bathroom. She got there ok, but dropped her cane. She made it back to her room, but was afraid to try to get into bed by herself, so she turned on the light and sat in a chair to read. My husband woke, saw the light on, and went down the hall ( probably without his cane or walker) and helped her get into bed. Neither of them wanted to wake me. Thoughtful, but what would I have found had they both fallen? I tripped over a pillow on the floor and the look of alarm on his face echoed one of my great fears--what if something happens to me? This is not safe for any of us.

Well, I guess it is for the best that I've accepted this reality now, before it becomes even harder for her to make this move and before we face a real crises (exrays showed now new damage from the fall, so muscle pain and weakness is why we're back to having to walk her everywhere and help her wth everything).

Perhaps this should have gone in the rants forum. I'm heartbroken. My lovely husband says wait...he's getting stronger after his surgery and is needing less help every day and she'll not get better care anywhere than she gets here. He's always been a caretaker. I've fallen further down the rabbit hole, but I know enough to accept this timely warning and act on it while I can call some of the shots. So, I'm going to be positive. She will be away from the daily stress of watching what's going on here and she will have people around her to socialize with. She will be very close to my sister and will be able to visit often. We will have more freedom while he is still able to enjoy it (we pick up the wheel chair van today thank God).

Of course, I logged on today after being away for several days only to find more losses, and I'm humbled. I whined anyway. I'm rambling, but feel better for it. Thank you for giving me a place to vent. I HATE this monster, but I LOVE all of you.
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Old 11-17-2014, 07:17 AM #2 (permalink)
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Default Re: Wake up call and hard choices

Nuts, rant all you need. We're here for you.
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Old 11-17-2014, 07:44 AM #3 (permalink)
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Default Re: Wake up call and hard choices

Nuts, oh, your pain is so felt! Please don't tear yourself up with guilt- your mom will not want that. You've done the best you could, as all of us CALS have. Your husband has to come first! Please take care of yourself, because you know without your health, everything falls apart. Glad you can see the positives in your mom's new situation. It WILL be okay! Hugs and love, Donna
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Old 11-17-2014, 08:23 AM #4 (permalink)
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Default Re: Wake up call and hard choices

So very sorry. Completely understand, one person you love to care for is plenty! Finding her a home where she will be safe, well cared for and will make new friends is paramount now. A difficult decision and transition but one I hope will be positive for you all xo
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Old 11-17-2014, 11:10 AM #5 (permalink)
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Default Re: Wake up call and hard choices

>Perhaps this should have gone in the rants forum.

nope, you put it right where it belongs!
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Old 11-17-2014, 12:18 PM #6 (permalink)
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Default Re: Wake up call and hard choices

You post whenever and wherever you need to. We have two elderly parents (almost 90)... and I could not imaging having to care for them, too. Fortunately, we have other family nearby... and everyone pitches in. When most every day ends with more things on the "not completed" list, it is all I can do to remind myself that I can only do what I can do. The hazard of being a loving, caring caretaker is that we want to make everything better and to never say "no". Unfortunately, we each have limits... and need to set boundaries for ourselves, too. If we don't, no one else will... and we risk our ability to remain healthy (physically and mentally).

Kudos to you for recognizing limitations. You set a good example and give me hope for myself...

Jim
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Old 11-17-2014, 12:36 PM #7 (permalink)
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Default Re: Wake up call and hard choices

No one should ever have to make these kinds of choices, yet here they are.

I tried to care for my brother after he had surgery on a brain aneurism and was nearly blind. It was a disaster, one blind man, one immobile man who couldn't talk...

I felt I was being torn in half to have to choose between the two men closest to me - my husband and my brother. I had to realise that I was not choosing between them at all. I had to choose what was going to be best for all three of us. I knew that me trying to be carer to both in the one house was plain dangerous and simply impossible.

You are at that same point. Rant away here all you need, we are with you girl!
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Old 11-17-2014, 01:51 PM #8 (permalink)
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Default Re: Wake up call and hard choices

All I can tell you is that I never wanted to put my mom in a nursing home either, and if she hadn't fallen and broken her hip, she would still be home with us taking care of her. I can honestly say that her being in the nursing home is better for her emotional state than being home pretty much by herself with us all coming/going in shifts. I realize that your mom is living with you and your husband and not alone, but I've come to realize that the patients in the nursing home are like family to one another, and they care for each other. I know that this was not what you intended for your mom, but I admire you for realizing that you cannot do it all. Your mother will be ok there, once she gets settled in, and you can focus on your husbands needs and the 2 of you as a couple. I'm not superwoman, and with all the care that my mom is now receiving, I no longer have to pretend that I am. I wish you the best.

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Old 11-19-2014, 12:49 AM #9 (permalink)
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Default Re: Wake up call and hard choices

Nuts,
You are very far from your screen name!
I know that you know you are doing the right thing. You are not "reneging" on the promise you made, only ensuring that the thought behind it -- to keep her safe -- stays real.
I am sure that with careful searching you can find a good facility. Much better to do it now than under pressure of an emergency.
I agree w/ Jim, you're setting the best example for us all.
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Old 11-21-2014, 12:43 AM #10 (permalink)
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Default Re: Wake up call and hard choices

Seems more like clear thinking than ranting to me! Sometimes life just completely disregards our commitments and intentions and just throws us a curveball. Sounds like your mother will do well in assisted living near your sister--and she knows your desire to care for her--what greater love than that?! Wishing you peace with the changes and hope you and your husband enjoy that new van.

The best to you all!
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Old 11-21-2014, 08:52 AM #11 (permalink)
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Default Re: Wake up call and hard choices

Nuts you sound like a loving, caring, wonderful wife and daughter. And your husband sounds equally wonderful. So sorry you are living with all these hard choices but it seems you are making sound decisions.

Rant away...although that didn't sound like a rant at all
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Old 11-23-2014, 07:29 PM #12 (permalink)
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Default Re: Wake up call and hard choices

Thank you all for your supportive words. I know that we each have our own set of challenges, but it's nice to be able to vent. Tillie, I've thought of your situation with your brother many times over the past few months; I guess I knew this would happen eventually, but just couldn't face it without some event to force it on me. I'm fortuante to have a sister who will step up---not everyone does. We're planning the move some time in January. In the meantime, her meds have been adjusted (I JUST got her into the Duke Movement Disorder's Clinic, which is in the same building as the ALS Clinic--hate to move her from there) and we're doubling up on home health: my husand's physical therapist will start working with mom also this week and we'll be adding her to his OT's schedule. The speech therapist has been here for her--my fingers are crossed that hubby doesn't join that party for awhile. I asked about an aid to help her out with showering until we can get her stability back and the PT asked responded that "they" would ask why the family can't do it. LOL---I asked him if he remembered evaluating my husband. Helping shower and dress two other people first has me almost forgetting that I haven't brushed my own teeth yet! I think they'll be coming through.

Things have been a little hectic...

Have I mentioned that our master bath was gutted last week? I'm relieved that they were several weeks behind schedule--I can't imagine having had it done when hubby first came home fromt he surgery. At least now he can use the walker and get down the hall to mom's bathroom, and when it's done we'll have a wet room shower and accessible sink. I'm having to give up the second sink in exchange for the external door the VA wants in or near the bedroom, but I see advantages to being able to come straight in to the bathroom (we live on a lake).

On a very happy note, my sweetie's third clinic appointment was this past Tuesday and his MIP and FVC numbers were both back UP! He slipped from 80s to 60s last quarter, but his MIP hit 100 and his FVC was in the high 70s. Breath stacking DOES work (at least at this point). That news helped soften the blow about driving being out unless he passes a comprehensive asssessment or goes to hand controls. As you might guess, he's planning a few more weeks of PT before trying again for the full enchilada. I rather expect the new van to be going back in for hand controls, but one thing at a time...

Right now the good is balancing the bad, for which I am grateful--as I am grateful for this group. You all amaze me every day.
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Old 11-23-2014, 08:18 PM #13 (permalink)
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Default Re: Wake up call and hard choices

Nuts, I know you must be overwhelmed and rightly so. So many challenges in life but know we are here for you.

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Old 11-24-2014, 12:46 AM #14 (permalink)
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Default Re: Wake up call and hard choices

Wow Nuts you have done an amazing job there!

I'm so glad you have a sister to help out, that is certainly a bonus and much needed. Doubling the home help is also wise. It's not just needing the help, but how can you possibly be 'everything' to two high needs people? It's just not possible. I know that many days I never brushed my hair at all, it would still just be in a falling apart plait from the night before. I would be lucky that I always dressed in my day clothes as soon as I got out of bed, as I never looked at what I was wearing again all day. And that's just looking after one person!

You sound like you have made some solid, sensible plans now and there is no guilt associated with organising the very best for everyone. GO GIRL this is awesome.

There is much said about the value of breath stacking. I managed to get Chris to try it once. That was the problem with FTD. He knew all the research on it and what PALS say about it helping. But he just had no capacity to put it into practice. I remember early in, he made this great wrist extender from looking at what they had at the physio place he was attending. That's the kind of man he was - he could look at something, work out how it worked, then just build it from anything. The clawing of the hands is not caused so much by the hands or the fingers, as by the wastage of the extensor muscles running up the inside of the forearms. So he built this contraption, strapped his arm in it, changed to the other arm after a while. Then it sat on the veranda and he never used it again ... If I tried to encourage him to use it, or breath stacking or any of the things he was shown and told to do he would nod and say yes I'll do it soon ...

So encourage the breath stacking. Who knows how long it will work, but as long as it does, it will improve both of your lives so much.

I'm doing a happy dance for all your news!

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Old 11-26-2014, 06:51 PM #15 (permalink)
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Default Re: Wake up call and hard choices

I absolutely admire you nuts! You are doing such a great thing for your husband and your mother. As someone else said you aren't renigging just kepping your word to keep her safe. She sees how hard you work to take care of them both and I am sure she knows how blessed she is to have you. A nursing facility may be wonderful for her as she will have peers there with similar inerests and activities and things she can do if she wants. Hats off to you for all you do! Please come here for support anytime you need or want to!
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