Give yourself a pat on the back ..

[Althea-c]

All your dear carers need to be acknowledged for the self less care you put into your loved ones.

I have had a hard time these past few days and feel like I'm living in a time warp.

Just when I thought things were going well with my Barry he seems to have slipped back again.

I can not allow myself to think this is the new normal.

So much of what he is trying to tell me .... I can't understand.

We still have so much to talk about.

My heart is breaking.

Althea 💛🙏

[abirke]

I'm so sorry Althea. It sounds like you need a minute to yourself to process all of this.....If he's too hard to understand , NannaB taught me this one....have him hold his thumb up for yes or down for no....And remember we're all hear for you

((HHUUGGSS))

AVB

[Althea-c in reply to abirke]

Thank you for your precious reply. Being part of this group and knowing that I am not alone means the world to me. Yes, I remember NannaB saying that in one of her posts. She always has wonderful advice.

Alas.... Barry's understanding of holding thumbs up or down and reading words on a board is very poor. I too have a problem with my hearing which makes matters worse.

Much love, Althea 💛🙏

[abirke in reply to Althea-c]

Yes it's never just one thing is it...B would'nt really do the thumbs up down thing till late last year.....I had to constantly re ask....and then not being able to hear well doesn't make matters easier,

Is Barry in the hospital or at home?

[VronB]

I'm much the same. John's speech is much worse after uti a couple of weeks ago struggling. Let's keep strong. Xx

[Althea-c in reply to VronB]

Don't forget the pat on the back 💛🙏

[Duffers]

Hi althea. A thumbs up after several tries is all we have now. Long past reading boards or any other such things. Gers eyes spend most of their time looking upwards now.

Marie

[Althea-c in reply to Duffers]

Seems as though so many on this group are at similar stages with their loved ones. Let's keep in contact 💛🙏

[doglington]

Same here. I can't help crying when he makes a great effort and I can't understand the meaning. He's slow with thumbs up too. He's fading away.

Jean x

[Althea-c in reply to doglington]

Dear Jean, my heart breaks to hear you say... He's fading away. I have lost the Barry I knew day by day.

Althea 💛🙏

[allotmentartist]

So sad just sending you all big hugs xx

[Althea-c in reply to allotmentartist]

Thank you, I needed that 💛🙏

[Pentland]

Hi Althea. My husband is no longer able to do thumbs up/down so I give him my hand to squeeze when the answer is yes and he simply does not squeeze if his answer is no. It is important only to use closed questions that need only to be replied by yes or no and only one question at a time. It cuts down a lot of the potential frustration. Hope this helps. Look after yourself.

Margaret

[doglington in reply to Pentland]

I do as well. It really reduces life to minimal, doesn't it ?

Jean x

[Althea-c in reply to doglington]

💛🙏

[Althea-c in reply to Pentland]

Advice taken. Every bit helps. Althea 💛🙏

[Kevin_1]

Gosh

This post and the replies say it all really.

They fill me with sadness. We are in the same boat.

Althea - Do you have care coming in? I would never survive without it.

((((HUG))) - I think that is a hug all round?

Warmly

Kevin

[Althea-c in reply to Kevin_1]

Hi Kevin, read my reply to abirke.

I am blessed beyond measure to have a wonderful carer. I employed her only 5 weeks ago. I can't believe I used to do this on my own.

Much love, Althea 🙏💛

[Althea-c]

Dear abirke,

Barry is at home. 5 weeks ago I employed a Carer. Her name is Voyo, she has a wonderful disposition, she is physically very strong and she 30 years old. I am BLESSEd. As you know this becomes a two man job with all the lifting,feeding,shower, toilet etc!

Barry has been in hospital 4 times in the past 10 months and is " Gat vol" a South African expression for " he has had enough " I have to respect his wishes but ..... I'm concerned about the future with complications that may need hospitalization.

Bless you for asking.

Much love Althea 💛🙏

[daddyt]

Kudos to all caregivers, remember to be good to yourself.

[Christine47 in reply to daddyt]

I'll drink to that!

[Althea-c in reply to Christine47]

🍷🍷💛🙏

[Althea-c in reply to daddyt]

💛🙏 and you

[Althea-c in reply to daddyt]

💛🙏

[JantheNana]

Althea,I read these comments and I see myself just 6 weeks ago.The "time warp" comment is so descriptive of the condition you are in.It is a feeling of constant waiting-but waiting for what? The unknown.

My heart is breaking for you also!

Janet

[Althea-c in reply to JantheNana]

Dear Janet, my heart breaks for all of us. I cannot think of a word vile enough to describe PSP.

How is your loved one ? Wishing you strength. Althea 💛🙏

[JantheNana in reply to Althea-c]

Althea,my beloved Don passed away on July 12.He was in rehab trying to get strength back to come home when he died of a heart attack in the middle of the night (in the middle of a breathing treatment).I have a hard time wrapping my mind around that still.He had no heart problems.I know God works in mysterious ways and that is the only way I can reconcile his death in my mind.We would have celebrated 54 yrs of marriage tomorrow.

[Althea-c in reply to JantheNana]

I am so sorry I didn't know of your husbands passing. I see so many posts on this site and still don't know all of you. Bless you for replying 💛🙏

[Yvonneandgeorge]

So sorry to hear that, PSP is so unpredictable, I hate these stages, were something happens, make you feel so sad, especially when you can't understand what they are trying to say. Last night when I went into the bedroom, George was sleeping had made such a strange noise I thought he was passing away xxxxx

[Althea-c in reply to Yvonneandgeorge]

Dear Yvonne, how we all live in fear of the worst happening is so sad. When I think of the stages Barry might still go through I wonder if he wouldn't be better off. Sounds callous but I love him too much to see him suffer.But on the other hand as my grandmother always used to say ... life is sweet, we all hang on to it.

Althea 💛🙏

[Yvonneandgeorge]

Yes I feel the same xxxx

[Escada29]

Hi you mentioned "Time Warp" I have been having similar feelings that I cant explain its very strange feeling is it a time warp the feeling of time?? Does anyone else feel this strange way? Time is passing by.