At last we have two days without carers,district nurses,tissue nurses and all the others coming and going offering me equipment that Jim can't use as he has now been in bed for three weeks as his legs cannot support him. I know they mean well as he has got some horrible pressure sores but I feel like they want to take over my life at the moment . Sorry just letting of a bit of steam I feel like I just want to lock them all out and just have sometime alone with Jim.
The weekend.: At last we have two days... - PSP Association
The weekend.
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I Know what you mean. I love Saturday night when I know we will be alone at last but when I am struggling to get Colin into bed I regret not having anyone to help me.
We had a ripple matress delivered yesterday, no we didn't, we had 3 ripple matresses and 3 pumps delivered. The first 2 wouldn't stop bleeping. The OT called on Monday and I mentioned Colin had a tiny sore on his bottom, this size O. She said we didn't want it getting bigger so ordered the matress and a new rise recliner which has a special seat. She has also ordered a standing hoist as I am having a job transferring him, and a tilting shower chair. We need a bigger house.
What I would really like is a lie in, not to have to get up for carers, to wake up, roll over and go back to sleep for as long as I like....bliss! I have carers at 7am every day of the week as I can't get Colin out of bed on my own.
I hope Jim's pressure sores can be treat effectively.
Enjoy your time together weekend.
Nanna B
Glad it not just me. Jim has had his bed for about 4weeks but I need muscles I.didn't know I had to keep moving it. Love it when I change the sheets on it inevitable I end up on the bed with him and bless him he will say sorry not today at least he still has a sense of humour. They do help I don't have to bend down anymore so saves on my back. Enjoy tomorrow. Denise
I know exactly what you mean, quality of life for the carer certainly does not improve with the intrusion of 'helpful' people (usually fitting you in to THEIR busy schedule). With all we have got to cope with WHY SHOULD we always have to get up at 7am every morning and be on call to deal with questions, supply anything needed etc.? I tried it, but found it too rigid for both Tom and myself, so we are muddling on doing everything in our own time. Fortunately Tom is still able enough to do this (just) and I am still fit enough (just) but daren't think about the future. Can't do anything to help you guys but its a comfort that we share the same problems and are not alone or unreasonable in our expectations.
This is a really difficult one because frequently both carer, cared for and care worker are all fairly tired by the end of the day and, after a bad night, even first thing in the morning, so we are not meeting up under the best of conditions. I at first thought that the amount of equipment and frequency of visits was close to overkill. Circumstances proved me wrong in most cases, the experienced carers had seen much of it before and anticipated needs before I had identified them. Foremost amongst these was a hoist, it seemed enormous, similar to a garage engine hoist, and the sling seemed the size of a circus tent, however for my wife's comfort it proved a boon during transfers. I felt the same about hospital beds, air mattresses and pumps, they all take up a lot of room in a normal house not designed for care equipment. I learnt how essential all this equipment was and to appreciate the morning and evening calls, even if the times were irregular. Caring can't be done to a tight time scale, so if the ladies were running late my sympathies were with them as they had clearly had a busy/hard time.
I hope your husband's pressure sores respond to treatment and your carers give you the space you need to enjoy time together, above all, exercise that sense of humour there is no substitute for it.
Best wishes, Jerry.
Do it lock them out enjoy time with jim all they have are memories make more he will love it no matter how long he is in that bed.