Update on our changes

[Reidallison]

Hello all, I have wanted to post lately for some reason, don't really have a question this time,just want to tell someone what is going on in our lives. As you all know my mom who has psp was living with me most of 2017. But she then moved into a brand new very nice assisted living home 10 minutes away, she had a living room, bedroom,kitchenette, bathroom and wore a pendant around her neck so she could call them if she needed anything lots of activity and they would take them anywhere they wanted to go, a very nice set up,she couldn't walk by herself,but she got around in a wheelchair mostly by using her feet..dining area with 3 specials a day..but if she didn't want to eat the special she could order off the menu, cloth napkins. I ate there quite abit! Although it was a joint decision for her to move there she never liked it and was mad a lot and wanted to go home!!! So 3 wks ago, I moved her back to her house, that has sat empty this whole time, glad now we didn't sell it . So.. my story is.. we have 2 wonderful cars takers, my sister and I and hospice is now involved taking care of my mom 24/7. She weighs 79 lbs. can't walk by herself, we walk her as she leans forward with all her weight, can't go in her wheelchair anymore, can't hardly talk, can't hardly eat, her mouth won't open, can barely get a straw between her teeth!! But can't sit still!!!! She wants up every 3 minutes, and tries by herself, you have to watch her at all times, wants her shoes on, then wants her shoes off..all day long! She wants to go outside then she wants to go inside.. all day long !!!! Never naps, has to be moving all the time . She has gotten soooo much worse since she's been home. And she sees things.. bugs, snakes, stairs,cats that aren't there!! No medication! Except a patch for phlym. She drinks fluids through a straw all day but is only urinating 1 every 24 hrs. ( is that ok? ) I guess I'm just rattling on.. she just really changed as soon as she got to go home and it wasn't for the good!! Thanks for listening to me rattling, I keep each and everyone of you in my thoughts and my heart!!

Love, Alli

[aliciamq]

Wow. So sorry you are dealing with so many things at once😐

[Reidallison in reply to aliciamq]

Hi to you and I appreciate that. I know everyone on here is dealing with their own situations and I am so sorry that anyone has to go through any of this! But it is so comforting to know that know matter what or when we need a little pick me up or some advise someone is always on here that will help!! I love each and everyone of you!! Alli

[Kevin_1]

Hi Alli

You are coping with an awful lot!

It may not be the move which has made her worse. It might just be a 'step down'.

As for fluid intake you will know if she isn't getting enough the urine becomes dark. However you should be looking at about 2 litres (just over 4 U.S. pints) a day and more in hot weather.

Are you giving her high cal. liquid foods to try to keep her weight stable?

It sounds like a neurology review is in order. They might be able to give her something to settle her a little.

It must be exhausting for you.

Warmly

Kevin

[Reidallison in reply to Kevin_1]

Kevin

We are trying to get a sufficient amount of calories in her, but are we? Not sure. She chokes so much ( sometimes ) and other times she doesn't. We are talking today about something to settle her a bit. I feel like with her anxiety and restlessness she is burning calories as fast as she's getting them!! Thanks for your reply. I along with everyone else sure do appreciate you!!

Alli

[Kevin_1 in reply to Reidallison]

Thank you and good luck.

It sounds as if you are doing an amazing job of caring for her.

Yes, the weight loss stage of PSP/CBD is difficult to slow. Something goes wring with the ability to make use of the nutrition.

Best to you all

Kevin

[Ratcliffe in reply to Kevin_1]

If she like puddings, like the mousse type ones, try the fortified ones, they are chock full of calories and good stuff. You can get them free on prescription in the U.K. if pension age, I was just organising them for David when he died. He had the sample pack and seemed to quite like them.

[raincitygirl in reply to Ratcliffe]

Hi Derek!! Nice to see you

[Reidallison in reply to Ratcliffe]

Thank you, she does eat puddings but I didn't know about the ones your talking about, she drinks protein shakes that are high in protein and calories, and I make her smoothies every day.it is becoming very difficult to get a spoon in her mouth because her mouth won't open, but a small straw works best. Thank you I will check into those.

XOXO Alli

[raincitygirl]

Dear Alli, Such a hard time...Very little you can do, and nothing seems to make her comfortable, poor dear lady. I agree whole heartedly with everything Kevin said.. Hopefully her neurologist can prescribe something to settle her emotionally/mentally.

Heartbreaking, these last life struggles....

Big Hugs to You!! XXX

Anne G.

[Reidallison in reply to raincitygirl]

Hello, we are as today getting her something for anxiety maybe it will keep her still, for someone so tiny and frail it sure isn't slowing her down, she was moving every second of the day today!! A friend came by today and whispered to me that she was exhausted just watching us! I don't mean to make lite of the situation, but it keeps me from crying about the situation! Thanks for your support

Love, Alli

[Dance1955]

Oh you poor things yes it's exhausting I don't think anyone understands unless they have someone like it keep going you're amazing try to get a break I think it's the only way to get through this horrible disease

Love and beat wishes Irene

[margh2468]

Hi there, totally know where you are coming from. Sadly lost (hubby) Leon 8 weeks ago, it is an incidious illness. Leon was similar in that he never knew what he wanted, it was exhausting caring for him. Just have to remind ourselves that it is the illness not the person. Thinking of you, with massive hugs from Howlong N.S.W. Australia. xxoo

[Beads0122]

Alli,

Thanks for the update. I know it’s is hard for you and your sister in this frustrating phase of the disease. I’m glad to see the other posts of encouragement from our friends in theis forum. You are doing a wonderful job. Use this time to tell her how much you love her and all the things you appreciate about her. Cherish this time with her.

Blessings,

Bobby