Just having a bad time of it.: I keep saying... - PSP Association

PSP Association

9,262 members11,356 posts

Just having a bad time of it.

25 Replies

I keep saying I can't keep doing this ,it just feels like someone has a foot on the back of my neck . my husband who is now into his 11th year is definitely sliding,he only commucates by thumbs up or hand wave off and that is diminishing now . Sleeping more and eating is such a challenge.

I'm at my capacity, my older sister(73 ) just had her breast removed due to cancer today,waiting now on pathology. My youngest sister is a brittle diabetic and had been told that amputation of leg is the next step,she has been trying to keep it for the last year. My sister who is only 15 months older then me (66) has been diagnosed with ALS on Friday....2019 can kiss my butt and I don't see 2020 being any better.

I better have cheese with my wine

Thanks for reading.

Dee

Read more about...
25 Replies
Helen119 profile image
Helen119

Loads of love and hugs to you xxxxx

honjen43 profile image
honjen43

Oh Dee! You have been through the wringer this year! How can all THAT happen to one family in so short a time. Sounds like Life is trying to kick you while you are down.

Have that cheese and wine! Moan here as much as you want!

You so need to think of yourself too! You sound like the strongest of your family. Make sure you stay in good health. When did you last have time to talk to a doctor about yourself? When did you last get some respite care, you must certainly be care worn (out!).

Would a couple of days away from the whole scene be on the cards - somewhere to build your resolve for the next hurdle?

Can you ask for Hospice to be involved so that you can step back from the load you carry, even talk to them - they know what you are dealing with and may be able to help you manage some of the burden.

You need to deal with one thing at a time! Ask for help in making the right decisions.

I feel helpless here! I understand how you feel and I send you a BIG HUG. I know more will join me!

Try and sleep after your wine - and keep us posted.

Lots of hugs!

Jen XXX XXX XXX

Tippyleaf profile image
Tippyleaf

Dear Dee

Ouch ouch ouch. What a lot you have going on!!!! Original post had an expletive in which I have just deleted. No pearls of wisdom but

Sending a hug and lots of love

Tippy

You need an IV of wine. What a list. This is where people will say remember to take care of yourself. You could use a break if it could be managed somehow. I know that isn’t an easy thing to do.

Kevin_1 profile image
Kevin_1

My goodness Dee

What a year and the foot on the back of the neck as well.

Is there any extra practical support you can get?

I hope your results are OK.

Sending some love your way and lighting a small candle of hope to burn through the day.

Warmly

Kevin

easterncedar profile image
easterncedar

I'm with you, Dee. 2019 has no fan here. I'm really sorry about all your family illness. So much grief all at once. I wish I had more to offer than sympathy and a virtual hug. Hang on. Love, ec

AJK2001 profile image
AJK2001

What alot on your plate, I am so sorry.

I understand the challenges of a brittle diabetic - my brother was one - not only are there the health problems but the mood swings ! He had an amputation below the knee and got on fine until the other ankle disintegrated on him, luckily that one didn't get infected & he refused amputation, instead had a plaster cast on it until he died several years later. With the single amputation it took a bit of time for him to get back on his feet but he did and was able to walk & drive still.

I hope you have someone to off load to, we all need a pressure release valve.

Thinking of you. xxx

Dadshelper profile image
Dadshelper

It sounds like a very very rough year for you. Do you have the means to get extra help in so you aren't doing everything? If you haven't I'd talk to his doctor about getting hospice or palliative care.

Ron

Brenive profile image
Brenive

Sorry to hear about your family problems , dont spoil your wine take it neat , and forget the cheese. The big C has been around our family the pasted three years. I thought it had passed me by . No such luck it came calling on me in February. Lucky it was stage 1 .so after an operation , , I'm now feeling better and getting back to careing for my husband .Ido have care for him each day, they do the showering for him, So things are on the up for me...any way good luck , drink the wine and save the cheese for another day...Brenda xxx

SusieTess profile image
SusieTess

Dee, my heart goes out to you and your family...how much is too much...I think 2020 has to bring some peace to all of you...enough is enough....

Lots of hugs and love for you ...

Kathy

Hiking13 profile image
Hiking13

Dear Dee

Sending you a huge virtual hug - life can just be so unfair and you are having a great big dollop of unfairness at the moment. We are all here for you so rant when you feel like it. I really don’t know what else to say - my sh** year was 2019 and you do end up feeling so helpless but things will be different one day or so I keep telling myself.

Sending you lots of love

Sarahxxx

Sunsetboulevard profile image
Sunsetboulevard

This is dreadful for you . You must feel as though you are drowning . I’m so sorry

doglington profile image
doglington

What a lot for you to cope with Dee. I wish I had something useful to add to the other comments. It's just a dreadful time. Everything passes eventually.

Big hug for you and enjoy the wine.

Love Jean xx

fishponds profile image
fishponds

sending Angel blessings and big hugs xxx

Thank you everyone, time to regroup and carry on.

Dee

Skye04 profile image
Skye04

Dee....I am so..so sorry..It's hard to imagine how you can regroup...but you sound like a very strong person and my heart goes out to you...sending hugs....

Walter1944 profile image
Walter1944

Dee I have similar problems and sympathise with you. All I can say is enjoy the wine and cheese

Vicenzo profile image
Vicenzo

You poor thing honestly I’m 63and been diagnosed with psp I’m seriously been thinking’of assisted suicide as I cant think of things getting better

in reply to Vicenzo

Vicenzo,I'm sorry you are going down this journey, I hope you have a support group to help and you know that no questions,statements are out of line with our group here

My husband is in his 11th year and his quality of life is still pretty good.

Hugs to you

Dee

aliciamq profile image
aliciamq

I am right there with ya! My friends daughter just died and I can’t even run over to give her a hug ~ I’m so angry about it. My 90 year old mother fell and my sister had to fly in from Phoenix to help bcz I, the eldest, can’t do a thing for anyone but my 70/2 yr. old😑And I need to cook an effing turkey tomorrow — 😡😥Feeling so sorry for myself today. I will be thinking of you doing it and I will do it too. I just want a week long nap. So much to do...

in reply to aliciamq

It is so hard to support family and friends when you do not have the luxury of coming and going for more then the quick trip to the grocery and liquor store.Happy frigging turkey day😉

A big hug.

Luis

SewBears profile image
SewBears

I’m sorry that I’m late in responding to your post. I can’t tell you the number of times I’ve said”I can’t keep doing this”. My other statement is “I’m done!”. Granted, most of the time I was sleep deprived and dreaded the words the moment I said them out loud. I also mostly felt that way when everything was knew and I didn’t fully understand hubby’s disease. Things did get better though but for you, there is so much more going on with multiple family members, and I think you need a little get away. Problem being, would you want to come back? Only half kidding. I just wanted you to know that I have felt as you do now but we do find a way to cope. I will join you in a glass of cheese and wine! Toasting to your husband, both of your sisters and to you of course.

Try to live for each day and forget about 2020. It’ll be here soon enough and it doesn’t do any good to worry. Just get through today.

❤️ I SewBears

raincitygirl profile image
raincitygirl

Dear Dee,

Wow, what a sh_tstorm!! 😫

I know that you might have just needed to vent, rather than looking for solution suggestions (as if there are any solutions for a sister with amputations, or one with ALS..💔...)

But, because we are in the same province and health care system, I wondered if you knew about Community Health supported Respite Care for caregivers. You can get up to 14 days with hubby in temp placement in a residential care place and you free for a break. Just knowing that gave me strength to carry on....

Hugs, Anne G.

in reply to raincitygirl

Thanks Anne, I know of the respite but the boy ( husband )has said no and I do worry about the care,anyone I have heard about others coming home with UTI'S. He will be placed under palliative care in the new year and my understanding it will give me more hours,I really don't go out a lot but if I need to it would be nice to know that i can instead of hearing let me check to see if you have enough hours.

Dee

You may also like...

Just having a word with myself

backside Archie has been up and down for last couple of months but the good thing is he’s not been...

Having a bad day i hate this awful disease.

people in this world who i truly loved have gone dad passed away september 2019 now mum is slowly...

Dad's just been diagnosed with PSP but deteriorating so rapidly he could only have 2years...

said around 5 now since his follow up scan and appt Tuesday we've been told 2yrs and he now knows...

New here Dad just dx with PSP :(

getting older. He's 79. His wife is his primary caretaker but she works fulltime. She usually has a...

How many times do other people that have PSP fall?

My dad has PSP and this week he has fell nearly everyday if not a couple of times in one day, to get