Big Changes are happening too quickly - PSP Association

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Big Changes are happening too quickly

crab2093
crab2093

In only a few months the wheelchair has become one of the most important parts of our life. CH does not fall so much but then he does not do so much. Panic attacks sent him to the hospital for 5 days. Now his needs are far greater than before. He does not walk at all. He can sometimes turn in a circle when I take him to the toilet - a small room with rails on either side. He can move his hands from one rail to the other when I remind him as he turns around. He can ask me to help with garments at this time. He can sometimes take the spoon filled with food to put into his mouth and he just stated how much he likes the new plastic mug with the handles on both sides (I think that is what he said). He can laugh with confidence when a rare visitor arrives. I am sure that you can guess all of the things he cannot do. The changes are now happening too fast. So I am trying to focus on what he can still do. But PSP, I do not like what is happening to him.... Trying to keep positive ... Val

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Your description sounds oh so familiar. Dad went from using a walker with assistance to a wheelchair over a 3 day span. It wasn't because of falls but the fact he was expending so much energy to walk. Hopefully the progression will slow down a bit and let you get a new sense of normal.

Ron

crab2093
crab2093 in reply to Dadshelper

Thankyou Dadshelper, it helps to feel you are not going through this alone.

I’m sorry to hear that things are progressing but I like how positive you are about focusing on what he can still manage. Hopefully there will be a new plateau soon and he’ll taper off to a different normal.

My hubby is easily frustrated and then he becomes angry. I try to remind him of all of the things that he can still do and to be thankful. Sometimes I can change his attitude and even make him laugh but it’s exhausting.

Did the doctors put CH on medication to help with his anxiety? Some meds can trigger a decline and it my be helpful to review what he is taking. Call his doctor and describe what’s happening because there might be something else that you could try. I’ll keep good thoughts for you.

Sending hugs Xoxo from I SewBears

crab2093
crab2093 in reply to SewBears

Thanks, yes medication also made him want to sleep all day. So have eliminated all but nighttime calmer med and taking it earlier. RegNrse said older people take longer to absorb such meds so have brought forward evening meal etc. More alert this morning but legs would not work on wheelchair to car this morn. Eventually got him in but never again. In future we shall travel in Wheelchair taxi so shall not go out much.

So very hard to stay positive when we know there is only one direction - downward! Yet you stay as light and positive as possible to encourage a good mood in hubby, right?

Bless you and keep you strong Val. You still have him to greet every day, to help and hug for a little while longer. What I wouldn't give to do the same. ❤️❤️❤️

Anne G.

Thanks Anne. Yes that is what I think. Make the most of it while he is still here. Sometimes it just feels too hard but trying to make our time together as good as poss... val

SewBears
SewBears in reply to crab2093

Val, be sure to look after yourself too. Keeping the caregiver happy and healthy is probably the biggest challenge of all because we tend to always put our loved ones first. Understandable but very difficult indeed.

Xoxo

Val, all of this is so familiar.

Three years ago today we were on a cruise to celebrate our Golden Wedding and my big birthday. I couldn't even contemplate a holiday in the UK now. Chris no longer walks, can just about stand with assistance (we already have a stand easy here for bad days) and is moved everywhere by chair. He finds it easier if I feed him.

We are fortunate to have a team of wonderful carers who currently come in twice a day to help. A brilliant doctor, district nurses, OT and physio all support us well too. So we keep on keeping on, but there are days when I wonder for now long!

Hugs

Anne

We just got a RE TURN which is probably the same as a stand esi. I have it for the transfer from wheelchair to bed and back.... Also I had thought we could go for a trip somewhere but think that it is not possible now. We have left it too late I think... V

please take care when he turns in a circle, brian would do that and sometimes wed both end up in a heap on the floor , didnt have the strength to stop him , take care xx

crab2093
crab2093 in reply to lindaD_

Yes you are correct. At the moment he no longer seems to know what to do with his feet on the floor and his hands on the rails, he is also having difficulty with weight distribution. So when I reach for the wheel chair it feels very dangerous. I'm not sure what the next step is but feel sure that we are heading to it.... V

This is unfortunately the trajectory but he is safe and you are there. Everything is difficult and different for him and you.

Take care and try to take it slowly. I wish I had. The time went by so quickly

Love

Cuttercat

Val, Your description of your husband's current state fits my husband to a T about 2 yrs ago. Boy, do I remember the hand on grab bar exercise! If I ever forgot to remind him which hand to put where, he would go reeling. Sometimes I was able to catch him before the crash, sometimes not. Our OT recommended a stand assist device. It changed my life at the time. It allowed me to roll him around the house safely. He could pull himself up, and lower himself into the recliner or onto the toilet. It worked beautifully for almost a year. We were probably having a fall a week at the time we got it. We never had another fall using the stand assist. We got ours thru Amazon. I think the one we used was a Lumex. It cost around $500 at the time. There are videos on You Tube showing how they work. Maybe this would work for your husband too. It was a lifesaver for me and my other caregivers loved it too.

Pat

crab2093
crab2093 in reply to racinlady

Thanks for your reply, you cant imagine how I have searched for them. As you know it is so hard. I plan the be the kindest carer but catch myself being irritated by yet another call after I am sure is at last the sleeping moment. ... " pull up the sheets" "get me the blanket" " I am itchy" "My neck is sore" and on it goes although I think there is peace now...

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