Grumpy, sorry for rant.

Good morning;

Rick has been getting grumpy the last couple of days. On the 14th the doctor and I were talking and Rick over heard me say that he is very child like. Ever since he has been not so nice to me, told me to quit treating him like a child. He has started just being really mean to me. He laughs at everything because I think he doesn’t know what to say so he laughs.

He went into the kitchen and spilled tea all over the floor. I know that’s not a big deal but he hasn’t gotten his own drink in months.

His speech has started getting really bad and I can hardly understand him. All I can say is this life sucks, I’ve only been doing this for three years and I am exhausted.

[Hidden]

Rant away. Everyone here knows how exhausting it is to be a full time care giver with no breaks.

I don’t know what country you are in but if and when covid is under control think about respite care for Rick to give you a break.

[Dance1955]

Omg 3 years is a long time it changes the personality I’ve been doing it for 5 years I hate it I’m considering a nursing home now I’m exhausted too they are not the same people anymore it’s really too much mentally and physically

Take care it’s like looking after a stranger isn’t it xx

[Dance1955]

Hi Penny if you send me your email address I can send a picture of the oil but I can’t seem to put it on here thank 🤨

[Hidden in reply to Dance1955]

[e-mail]

[redyi]

Hi Penny I have exactly the same thing. Every fall breakage or spillage is a joke to him. I am mentally drained you have my every sympathy life is so hard for us as Carers

[tasha1944]

So sorry for your exhaustion - know how it feels. We are all in the same boat. Take care of yourself.

[Heady]

You are right, life sucks. We have all had days like this, no help I know, but we all understand your exhaustion.

What sort of help are you getting? Whatever it is, it doesn’t sound enough. Please, please try and up it, TODAY! Your husband needs you fully fit and you are not. Somebody once said on here, “My job is not necessarily to provide care, but to make sure my loved one gets the best care possible” we all think we can do everything, but it is impossible to care for somebody with PSP single handed. I crashed several times during my husbands journey ,due to not listening to this advise. This caused no end of damage to both Steve and me. My one big regret now is, I didn’t ask for help sooner.

Sending big hug and much love

Lots of love

Anne

[racinlady in reply to Heady]

I agree with Anne. Being a caregiver doesn't mean you do it all yourself. It means you make sure they are taken care of. Everyone needs a break!

Take care,

Pat

[wear1947]

Dear penny 1956, I agree with Anne. You need help NOW.

I have been taken care of my sister during 14 years. I couldn't accept to send her to a nursing home. Finally I have done this in February 28th 2020.

She took this change with a fairly good mood.

Now, I'm in front of my own health problems I have disregarded to take care of my sister.

Take care of yourself first. if you push your own problems to the bottom of the list, could be you will not be able to take care of your husband.

Good luck and Big hug

Elena

[LJsato]

Hi Penny,

My mom's speech has started getting indiscernible in the past few months as well, sometimes impossible to understand. I've been her caregiver for 2 years now as she's in the final stages of PSP and is completely dependent for everything. The speech issue is the biggest challenge we've faced so far. I've found some tricks to help the communication that I wanted to share with you. The one I use when she is completely unable to form words is to ask yes or no questions and have her hold up one finger for yes and 2 for no. The other that has been really helpful is I make her slow down her speech and tell me one word at a time that I repeat back to her right after she says it. This is very affective and allows me to comprehend what will come out like gibberish if she tries to speak at the pace she used to be able to. I have to remind her every time she talks to say one word at a time- it definitely requires patience but it's better than nothing and helps ease the frustration she experiences by not being understood. In her early stages speech therapy was really helpful for talking and also for swallowing.

We are fortunate enough to have caregivers now that come and help us take care of her- it has been a real game changer for my own sanity. It is massively expensive but if you can afford even a few days a week it can help a lot.

If you are in America and have Medicare he can qualify for hospice care with this diagnosis which I just found out this year. Hospice isn't just for people at the end of life, you can be on it if you are living with a terminal diagnosis. A nurse/doctor will come and check in a couple times a week, they deliver all meds and any supplies you need for free and they have staff who helps coach the family through it all. Also if you qualify for Medical they will apparently cover the cost of assisted living or skilled nursing.

I hope you are able to get some relief for yourself, it is so taxing to be a caregiver to someone you love with this terrible disease.

Hang in there!

Laura

[Hidden in reply to LJsato]

Thank you for the advice, he has hospice care and it is helpful ,the doctor saw him last week and said he shouldn’t be left alone. But I am still working half days now ,he stays in bed until I get home. It’s just lately that he has been mean. I wish I new what stage he is in.

[honjen43 in reply to Hidden]

Penny, I found 'stages' meant little! I had a better understanding through tracking change in state and increase in symptoms and then plotting a downward line in my mind.Hugs

Jen xxx