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KatieNBoyd

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Good morning,
I would like to know if any of you have used respite care for your PALS with FTD? I know that with our Hospice care that they allow a few days respite at our little hospital. I also know that our hospital and its staff have never cared for an ALS patient let alone one with FTD.

My PALS cannot talk (occasionally will use a boogie board to write hardly legible words/sentences that are not coherent), he doesn't eat, only drinks sips of water or juice, he walks with his walker, his weight is about 98 lbs. He ate a little bit for Thanksgiving dinner and seems to have renewed his longevity.

His meds are morphine (.25) and ativan, then at night rimorion (sp). He also has a scopimine (sp) patch behind his ear for the mucus/phlegm. He consistently scratches it off then I have to find it and tape back on. He only uses his trilogy at night for a few hours before he pulls it off and won't put it back on.

His OCD habits, scratching and picking at his body, getting up and going into the bathroom and sitting for 40 minutes (he has to only have three squares of TP to wipe himself), then standing at the sink, sipping water and spitting it all over for another 20 or so minutes. His blankets have to be arranged just so, he prefers to sleep in the buff. His clothes have to be put on and taken off just so. During the day he goes back and forth between (our bed room) his hospital bed, the bathroom and his computer. (I am pretty sure there is an impression being made in the wood floors with this repeated pattern).

It is just me and our 15 year old daughter at home with him (she has been a jewel!) Of course Hospice comes out regularly. Part of me wishes for a break. Part of me knows he will hate me for taking him there (not to say anything for the reaction from his children and his family).

Just wondering how it worked for anyone else. Thanks Katie
 

lgelb

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Hi, Katie,

From what you describe, I would think bringing someone into your home and leaving the cheat sheet would be a better respite option for him than a different setting, which would probably be very traumatic at this stage. I realize that might not be the most fundable option, depending on your plan and resources. If there is someone in the hospice who he seems to trust, perhaps that person or someone s/he refers could be induced to work "off the books" for a spell.

Best,
Laurie
 

affected

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Katie, my Chris had enough ability to make his own decisions and fully refused going into any respite. I know that it would have been very distressing for him as he was most comfortable at home.

I finally organised for caregivers and his children to be here to look after him so I could take a break. He was very angry with me, but there would have been 2 people with him all the time and 3 a lot of the time to make up for me not being here.

I can't tell you if it worked as he passed away a week before this was due to happen. But I do feel if you can have your husband cared for at home he will cope far better.
 

soonerwife

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Thinking of you Katie. I hope you find some relief soon.
 

KatieNBoyd

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Thank you all.
I believe it is just simpler to stay here where he is comfortable and not put any bumps in the road. Last night and all day yesterday he chose not to wear the trilogy.

Hope you all have a good week.

I moved my bike into the house on its stationary set up looking out the front window as something for me. :)
 

affected

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I get the sense you are feeling very tired, but also maybe you miss time with your daughter without ALS in the foreground.

Do you get help that allows you and your daughter to get out of the house together and do any girl stuff?
 

scaredwifetx

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Katie, I just wanted to send you a big virtual hug. I cant give much advise other than maybe getting out for even a hour while hospice is there. Just to get some fresh air. Maybe a bike ride with your daughter or a long walk. I am so sorry Katie. I think of you often and want you to know we are here. If you need someone to talk to just let me know.
 

KatieNBoyd

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Thanks all.
Our daughter is a busy girl. (I believe it has been a wonderful escape for her) She participates in Jazz band, Pep Band (which plays at most of the FB, VB and BB games), then Speech and Debate, as well as keeping super grades. She reads books (yep those ones where you actually touch the pages and such :))
I am able to get her to and from her busy activities most of the time (she isn't driving yet and friends have been wonderful helping us out). I was only able to make it to 1 or 2 of her VB games. Have not seen any of her concerts or debates. We have wonderful friends and volunteers but most the time when I try to plan one to be here (or on of his children) I have to schedule around them and their work schedules.

Most of the events she is in are in the evenings when nobody wants to drive around here (think deer in the headlights and such). It is just one of the unusual aspects of living in Rural MT. I still wouldn't change it.

Side note Jon has begun hallucinations, recently. Last nights adventure involved him pulling off his mask and demanding that I get him dressed. He tried to write on the boogie board but I could not read what he had written and he refused to write it again.

(I tried to divert his attention with a foot massage and such didn't work) So, I got him dressed, he had to have his shoes on. Then he got up from his bed and headed out the back door. He did motion for a coat when he realized it was cold. He also grabbed his walking sticks. So out the door(all the while me holding on to his belt loops for stability), down the ramp, passed the car, the camper and the trailer, then across the street (nope we have no traffic in Boyd at 11pm) then to the fence of our neighbors pasture. He got to the gate and tried to open it (now think Black Angus Bull In a very very dark field, hahaaahaha) this is where I drew the line. Finally he turned around and we shuffled back to the house. (Hailey was standing inside the door watching and listening to see if I needed her) Got back in, took off his coat and headed to the bed room. He grabbed the boogie board and wrote. "Can she drive me home!" I told him we would have to see. Then got him back to bed put on his mask with some morphine and he fell asleep.

This is why I don't go anywhere or leave anyone else in charge for very long. I know how this will end. I just don't know when. In the mean time I hug and kiss him and tell him I love him.

Hugs to you all.
 

scaredwifetx

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Oh Katie, my thoughts are with you. I know how hard this is on you. You are a wonderful wife and handled the hallucination very well. I know I would not have done such a great job. You and your daughter are wonderful. Big hug!

Hang in there!
 

affected

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hugs Katie xxx
 
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