The new normal: I haven't been on here for a... - PSP Association

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The new normal

EricaE
EricaE

I haven't been on here for a very long time but I promise I haven't forgotten you all, I just haven't been able to to post anything.

It's now just over a year since my brother was diagnosed with PSP - he also has frontotemporal dementia - such a short distance from walking boots to walking stick, from holidays to respite care.

He needs 24 hour care and support now - largely due to the dementia - in the process of adding night duties to the care already in place until such time as ....what?

I miss him so much.

Sending love to you all with PSP and CBD and your loved ones xxxxx

28 Replies
oldestnewest

Erica it’s so sad isn’t it, I hate this illness and on top of the psp he has dementia, I bet you really miss him, George has psp, I was only saying to him the other day, this is so unfair, all our dreams have disappeared, in hindsight we could all all done things we wanted to do? We all have plans for our retirement so unfair sending you a big hug. Could not believe it yesterday we had an horrible day, George fell out his wheelchair bashed his head on the cupboard, wheelchair closed up as he fell down, Lucky my daughter and her partner just left, so called her and the came back, we got him up, bruised head but all fine, frightened him though, and I was so frightened as well. Yvonne xxxx

It is so sad and so unfair Yvonne - so much pain, so many plans and dreams gone.

I'm very sorry to hear of George's frightening episode yesterday - I hope today was a better day for you both.

I hate this illness too and everything that comes with it.

I am very lucky in a way because, as I live 130 miles from my brother and still work, much of my life goes on but of course not as it did.

And I do miss him - my brother, my friend.

This is the first year for 32 years we haven't holidayed together - he's been an integral part of our lives for so long, no high day or holiday and so many days in between without him and knowing he will never come here again makes me so sad.

I visit him - with my husband - every three and half week for 6 days or so, we do what we can to support him, my brother-in-law and sister (who live but a couple of miles from him).

I've put the professional carers in place in the hope of enabling him to stay in his own home for as long as possible - which is what he wants. Fortunately he really likes them all - "couldn't fault any of them"!

I'm in the process of putting more care in place, I hope I can persuade him to accept it as it's really necessary.

He's just experienced his first week in a lovely residential care home - respite - it wasn't a huge success. He didn't want to be there - who would?

Sorry - didnt mean to go on.

I really hope tomorrow is a good day for you and George - as good as it can be.

Thinking of you both and sending you a big hug. Erica xxxxx

Erica you are not going on, it’s best to talk about it, people on here have been amazing, think I would of given up a long time ago without these lovely people. Yvonne xxxx

Thank you Yvonne xxx

raincitygirl
raincitygirl
in reply to EricaE

Bless you Erica: what a loving sister and good friend you are to your brother. Heartbreaking ly, with front-temporal symptoms he may not fully appreciate you, or demonstrate it - now - but I truly believe he senses in the fibre of his being, your love and commitment to him.

XXX

Anne G.

Thinking about you Yvonne and sending hugs. It's so hard and so sad and so endless. But when the end comes you wish for more. Alas.

CC

So true CC...so true...if only those moments of caring could be "banked" and drawn on once rhey ate gone. The absence is terrible...no matter how awful rhings were when they were alive...

❤️. Anne G

Hello beautiful lady how are you doing? Think about you often xxxxx

So sad but can't change anything. Hang in there.

CC

It is a bitter thing, Yvonne: our plans, our dreams for our retired lives were just destroyed. Then: we were given a new direction we never chose.

I send you my hugs. Is there anything that brings joy or pleasure to George? (poor man, toppling out of that wheelchair! as if he didn't have enough to cope with!) I wish you would give him a big big hug for me.

XXX

Anne G.

Anne thank you back to you xxxx

Erica it's good to hear from you again. We all lose our loved ones before they die which is so sad. Then we lose them again later. It is very hard to cope with.

You are doing your best for him and respecting his wishes. I really hope you can continue to do that.

Take care of yourself and give your brother a hug from all of us. Don't forget we are here if you need us?

Marie x

EricaE
EricaE
in reply to Marie_14

Thnak you so much Marie. How are you? xxxxx

Marie_14
Marie_14
in reply to EricaE

Erica, I am surviving! I seem to have forgotten how to live though. I am very much a people person and I find the lonliness so difficult.

My Grandchildren keep me going. Thank goodness they are really kind and loving. However I don't see the little one very often which is sad. He is a little sweetheart though.

The older one comes and stays with me one night a week which is great as we get on well. However she is growing up so won't be there forever. She will have her own life to live.

I really don't like it, or cope well with being alone. I am very much a people person and suddenly there are no people!! Talking to the wall is not great!

This site is my lifeline. Such nice people on here all going through various stages of these awful conditions themselves or their loves ones are or they have list loved ones.

Can I just say your brother is lucky to have such a kind and loving sister. I am sure through your life he has been there for you too and that is something you will never forget Erica. Love conquers all...even these conditions!

Pop back to us when you have 5 minutes.

Marie x

EricaE
EricaE
in reply to Marie_14

I'm so sorry to hear that you're struggling with loneliness Marie.

I think loneliness has - perhaps - as much to do with grieving, including for that which defined daily life for so long, as with being alone.

It's still only such a short time since you lost your beloved Garry, not long to adapt to your changed circumstances.

You sound like a really lovely lady Marie with so much still to give - so continue to enjoy your grandchildren and the company of your eldest grand-daughter - how lovely that the two of you get on well - and I hope with time, although I can't imagine you will ever get used to being without him, you will remember how to live again.

Thank you for your kind, supportive message to me - as you say, this site and the lovely people on it, is a lifeline.

Sending you much love, Erica xx

Yes Marie that is exactly what happens...We lose them twice..

Thank you for articulating what we experience so clearly.

XX A.G.

Anne how are you coping? I am having a bad day today. In fact I have had a bad week so far! Pretty awful isn't it? It hasn't been helped by a friend having a serious operation today. It has really dragged me down.

There must be light at the end of the tunnel but when you see it goodness knows?

I know you must be feeling stunned by all that has happened. I think we all go through hell and back but not sure our doctors know or care about the effect it has on us? Hope your experience has been better than mine in that respect? You should be having that numb feeling right now. Wish it lasted!

Hugs to you and much love. We know what it's like, although everyone's experience is different. Glad to say weeks and months are different too! Some are bearable!

Marie x x

Dear Marie,

Thank you for the conversation - I find talking with my friends here the very best therapy!

I'm sorry for your crappy day and week. It's funny: when I had a crappy day or week when Garth was here, I didn't think I could "load" it on him (he had cognitive/emotional decline as well as physical and speech decline, so loading him up with my burdens just wasn't "on". Also I thought it unfair to maybe make him feel insecure because I wasn't "strong"...) - and yet, I didn't feel as alone as I feel now. The power of our loved ones' presence, even when they are so diminished!! Amazing...

Yes, I'm in the 'numb' stage: If it wasn't for the wisdom shared by you Survivors, I would think I'm one heartless b___ch - because so many hours go by without tears. But I understand better because of yours and Heady's and Jean's and and and...posts. I understand it's a phase. I feel like a lump of concrete is in my gut and I feel like I weigh 300 pounds. The sadness feels like a deep but sort of soft keening sorrow. It's a deep deep ache of longing - but not agony. I am sleeping. (amazing to me! but oh so deeply needed and welcomed!)

I'm slow: some of that may be choice: I tend to shy away from the business of notifying this and that agency and go shopping at the stationer's to buy a new shredder (there will be lots of shredding when I purge the files, right? ;-)

and I feel better when doing "normal life" activities like grocery shopping, getting my hair cut etc. stuff I did in between looking after Garth. Only I have to return to the house at some point and...He's not there :-(

The only thing I can say I am doing right (as opposed to all the right stuff and support from dear friends on this site and my sisters and neighbours) - right, as in, I believe it's helping me, is I'm trying to find Gratitude for everything I can. I'm so grateful to have had that marriage! (I married late - was single until 35!) I'm so grateful that we had a good long shot at it (29 years) I'm so grateful that he was spared the worst of the CBD disease. I'm so grateful he died at home and I was there. I'm so grateful the death was quick. I almost feel guilty because I think I received more gifts that way (in the manner of death) than many of our friends here.

This may all be the "numb" stage talking, but that is how I am today.

I wish I was there to give you a hug Marie and go for Tea. I'm doing that in spirit :-) XXXX

Anne

Dear Anne

Wouldn't that tea be nice? I was supposed to go out with a friend yesterday for a coffee but couldn't face it! She came to me and I made her a cup of tea instead. I am getting really bad about going out. I wasn't like this before. I was reading the 7 steps of grief last night and think I am going through one of them. The thing is you can go through some of them more than once. With my luck that wouldn't surprise me!

Like you I felt I couldn't say anything negative to my hubby. I wonder if we are worse because of that? I was the strong one but really I was falling apart inside. Just like you. Although I have to confess to telling him off a few times. Now I feel so bad about that.

A shredder? I have one that hasn't been used to sort any paperwork out!! I still have lots of things I need to do but can't face them. I hope you are better than I am after more than a year.

The emotions are all over the place here. I honestly wasn't expecting that, which is stupid! I knew from others posting that they went through similar feelings. Some people seem to get on with their lives though. I feel locked in a bad place and can't move on.

Oh well we either get there or not?

I read an interesting document about research into Alzheimer's yesterday. All about trying to understand how the tau proteins multiply. I can't say I read it very well but the exciting thing is they seem to understand how the tau gets into the brain and damages other cells. They just need to stop it now? It will help Parkinson's patients and those with PSP and MSA. I am sure CBD too. They actually said it would help all with progressive neurological conditions. It seems to me they have made this advance from donated brains. They didn't say that but they did mention experimentation with cells so I figure out that is the same? So fingers crossed that it can be stopped? I think I will have to go out to celebrate that day. Assuming it happens before I shuffle off this mortal coil?

Anne take good care of yourself. Glad you are sleeping well. Not surprising when you think how much you lost? I was doing well there too but now can't sleep unless I go to bed at some very late hours!!

Hugs to you.

Marie x x

Marie, everyone says take your own time with grief and do it your own way. I believe that is true. I wonder though, if it can become a habit to be alone and be reclusive. I don't know if it's a negative thing.. Maybe, though, for some people it is necessary, at a certain point, to force oneself out a bit? I used to be really picky about the volunteer work I would agree to do: it had to be exactly what would stimulate me as well as convince me of its worthiness to society. Now I'm wondering if just "getting out there" once or twice a week isn't a bad thing just to sort of "jolt" one out of one's reduced comfort zone? I don't know - I'm too new to this, but it's worth discussing. One of my neighbours came to the door with a salad this morning (lovely!) and we discussed the guide dog (her dog) she raised to visit people in care homes. She looked at my little 7-yrs old Havanese, Penny, and said "she could do that work". Now I'm paying attention! I might just give Penny a try at that when they run a course this fall :-)

PS: How exciting, that article you read!! I'd love to read it! Would you please do a separate posting of it to the gang and include the link if possible? There isn't much new stuff ...good time to do it?

Hugs to you - Enjoy our chats :-)

XXX

Anne G.

I gave been going out until the past week Anne! Now I feel frozen! That's why I think I am going through another phase if grief. Someone told me tonight that it takes 8 seasons to get over a death! I have no idea if that's true or not but depressing if true?

Now I can't send the link!! If you send me a PM I can at least type it to you and you can copy it? Don't ask me why but I always gave problems posting links!

Marie x

You're right about the grief Marie: I told my family doc: "Grief is non-linear" He liked that so much he wrote it down! I believe it's more like rollercoaster or a maze or something, a twisty path - not a straightaway!

I will PM you, you give me the info and let me see if I can produce a link. \Maybe!

:-)

Anne

Dear Erica,

I'm so sorry to hear about your brother :-( The physical losses are heartbreaking, but dementia is another ballgame altogether: it truly feels like the person you knew and loved is gone. That is the cruellest aspect of these neuro diseases.

Hugs to you for the losses XXX Anne G.

EricaE
EricaE
in reply to raincitygirl

Thank you Anne xxxxx I'm so sorry for your loss xxxxx

A big hug Erica!

Luis

Thank you Luis

Dear Erica, What a lovely relationship to have with your dear brother, its heartwarming to hear of you devotion to him. I'm so sorry that he has become subject to the awfulness of PSP and the dementia too, life seems so unfair sometimes, watching them decline bit by bit is heartbreaking and there is nothing and nobody that can stop that pain. It's a big decision regarding their care as to whether they are best at home or in a nursing home, I was fortunate enough to keep Ben at home until he died just over two months ago but he didn't have the dementia or severe personality change and the problems that go along with that.

I'm sending you warm wishes and a big hug.

Love Kate xxx

EricaE
EricaE
in reply to Katiebow

Thank you Kate xxx

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