A Petulant Child

Biggles

its me who feels like a petulant child not my DH who, I really adore. I am so tired of trying constantly and doing constantly, being creative where I can and trying to find solutions,It's so very frustrating and exhausting. I am still trying to have a life for us within the boundaries of dementia. I am trying various Carers for a few hours a week, DH won't have anything to do with any of them; he now shuffles when we ‘walk’ and we have a lovely new wheelchair which he won't sit in, so walking is out; he cannot walk around a shopping centre so that is out; he refuses to sit in the garden lounge so I can be in the garden; his aphasia is so bad there is no longer any conversation just bad temper; he cannot understand the news on TV or the radio so silence is the go; he can no longer swallow his pills so until we can see the doctor again I have got gummies but will need liquid medication. I feel frustrated and find I am short tempered and have to hold it in. The life of trying goes on and on and I'm tired like the rest of us. Thanks for the rant.

CindyBum

Big, big hugs.

Bowerbird

I get you. This all sounds so familiar. My DH is now in a care home, so I do not have to deal with the day to day of this, but when I visit, it is pretty much the same thing. He loves to go out on rides, usually stopping for ice cream or lunch. He always wants to go "somewhere else," like a store, but will not use a wheelchair, so that is out.

I'm sorry I have no suggestions for you, but I feel the frustration you have.

wose

You nailed it Biggles. So so tired of trying. I try so hard too and all I get is grunts and smacks. My DH is losing his words at a rapid pace except for the bad ones. I don’t ask for or want anything but a kind word or a hug but that hasn’t been for many years. So we continue onward because giving up is not an option. We create a peaceful, safe and loving environment all at our own expense. It’s who you are @Biggles…an amazing person and caregiver and it shows in your words and actions. Don’t beat yourself up, you don’t deserve it. Warm hugs a cup of tea and for sure a nice leisurely day in that lovely garden 💕💙

annie51

Better to rant here than hold it all in. I hope it helps to know we’re listening and understanding how you feel. Hugs! 🫂

Lethe

I hear you… “trying and doing” ….

It IS exhausting so give your inner “petulant child” some grace.

Maru

https://alzconnected.org/discussion/77088/a-petulant-child

Hang in there, Biggles. This, too shall pass…what it shall become remains to be seen. We cannot control this process and we just do the best that we can. Maybe the life that you think you should still be able to have just isn't possible anymore. Your LO's limitations are forcing you into somewhere you might not like to go, but what choice do you have? You love him. I get the petulant child bit. If only a good cry would make everything feel better. This caretaking is all about sacrifice, sacrifice and more sacrifice. Keeping you in my prayers this morning.

Biggles

https://alzconnected.org/discussion/comment/282179#Comment_282179

Thank you Maru such wise kind words.

Biggles

Thank you wise, what an amazing group of knowledgeable caring people. You are right, we are here, because we are here, and can never give up. That cup of tea is sounding very good. :)

Biggles

https://alzconnected.org/discussion/comment/282121#Comment_282121

it helps enormously annie52 thank you

persevere

Oh Biggles, I feel your pain. I am lucky in that my wife is usually not hostile but otherwise everyday is a struggle just to get to 8pm when I finally get her down for the night. Total aphasia, doesn’t even look at a tv, on her feet most of the time. Constant verbalization - this is the worst part. There’s times where I completely lose it when I’m tired or have something else on my mind and I cant get her to stand still so I can clean her up after toileting. It’s a mess. The only way I’m getting through this is basically 3 things. One, I have a helper who’s been with us for a year now. She comes several days a week for 4 hours a day. Just find one you like (don’t worry about hubby) and stick with them. They will become part of the family. Two, hospice. You gotta have them. And three - meds. We are basically in a pseudo sedation state. For both her comfort and mine we can get a nap in midday most days and it helps to wind down in the evening.

Biggles

https://alzconnected.org/discussion/comment/282301#Comment_282301

Thankyou persevere wise words especially the helper. We have just started down that track and I think I was doing it the wrong way. After your wise words I’ll change tack, I’ll find the Carer that I like and is generally compatible with DH and just use them so they become part of the ‘family’. Comforting approach.