I see it is 5 months since we last posted. We don't look back or forward with this awful, energy sapping, debilitating disease we just survive. Each day has it own risks and its own delights.
Ch is almost bedridden now. He sleeps a lot more. We have help in on Monday (3hr break for me) Friday (a 4hr respite that day) and we have just introduced a shower hour on a Tues & Thurs. So I no longer do that as I was getting very exhausted... We can only go out if we have a wheelchair taxi as transferring into our vehicle became impossible and finally resulted in calling the ambulance to get him off the ground. Fortunately we have a taxi subsidy card which we had to apply for and also we now can get vouchers through our govt package. We don't use it much due to the 20 min wait either end of the journey.
Our OT enables us to get a old hospital bed (which a friend repaired) & a bedsore free mattress, a special shower wheelchair and have just got a headrest as Ch could barely hold his head up at the end of the day. Toileting is a problem as he needs to be supported until he is sitting, this transfer is made more tricky by the constant bouts of inane laughter and me having to explain how we are going to tackle each step of the procedure ( he no longer remembers that we have done this many times per day). It is best to be matter of fact, clear and to the point. We use a RE-TURN for transfer to bed.
We have thickeners for drinks to help with the coughing and mainly eat finely chopped stews & stirfrys with thickened juices or fish. Custards are popular as is icecream although the latter is not recommended. Berries, yoghurt & weetbix (Aussie cereal) for breakfast. Actually eating is a popular pastime and there have to be limits on this as he has gone up 4 clothing sizes in 18 months.
We spend a lot of time together and the only thing Ch enjoys is watching the news or a documentary, listening to me read a book or sharing the past via old photos, sometimes watching something silly like Mr Bean. He is not interested in the garden now. He likes to interact with others when he is not sleepy. We do not get many visitors, I think it is difficult for his friends to see him like he is as his speech is not easy to follow.
We have made contact with the local palliative care team who will be there for us when the time is close, although I thought he would have more than the 12 months they mentioned.
I did not want this to sound morbid as I began with the thought of getting some advice on starting up a PSP support group as the only support network is a Parkinson's group. Our city is fairly small. Don't get me wrong we are managing well and trying to make each day positive and making the most of this special times we have together. I hope that this sharing is of use to some of you....
Thank you for being there .... cheers val
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crab2093
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The post doesn’t sound morbid. Sounds like a normal day for a care giver. It’s exhausting, maddening and relentless most of the time. The few pauses throughout the day are appreciated.
Good luck on the support group. So few people know this disease. Our primary care doctor’s social worker suggested the Parkinson’s support group but I feel it would be a waste of my time. PSP isn’t Parkinson’s. It’s similar but that’s about it.
Hey, Val. Everything you say feels so familiar. I don't know how we all do (have done) it. The caregiving challenges are so unrelenting. It seemed to me that I would finally get good at juggling the clubs and swords and someone would toss me a couple of flaming torches. And I 'd learn to juggle them, too. Although I dropped things a lot.
Good luck with setting up the support group. I had this site, and it saved me. I never could have found the time to get out to a group meet anyway.
I always note your posts: I think you must have posted around the time I joined so I noted you and read whatever you said. You sound remarkably sane, I must say! 😉.
I'm glad you and hubby still have some good sharing moments together. When I was caring for my G, I loved him to the moon and back but hated "the life". Now life is whatever I want it to be, but nothing seems to matter with him gone.
It's all so strange. Thank heavens we have this community that understands.
Hey Anne. You said it. It's just like that for me, too. Except for my deciding to take care of my mother now! It was a good choice. She is much easier than my sweetheart. And it has given me back some of the purpose of life I lost when he died.
I would say that your achievements are positive and remarkable. This disease does not reward the efforts of the caregiver with an improvement in the health of the patient but with a slowdown in the progress of the disease. It seems little for so absorbing, continued and important caregiver´s effort.
Val, I perceive that his achievements are very remarkable and I know the effort that this entails.
Your positive, matter-of-fact post brings back memories of the good times we had through a very trying time. It's nice to finally be able to do that. I'll probably never forget the very necessary step-by-step process of toileting. You described that so well. Sometimes those good times are hard to recognize and appreciate at the time because you are so tired. It's good that you are getting some time away and have a chance to recharge. It really helps to keep your perspective. It sounds like you are doing a good job with that. Taking care of yourself is very important too.
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