I think I am the catalyst for this groups formation!
We have rapidly gone from a carefree couple disappointed that our planned cruise to the Caribbean was cancelled due to the outbreak of covid to a full-time carer for my wife diagnosed with vascular Parkinson's plus a severely curved spine topped off with a dropped head, she is wasting away in front of me as she is losing the ability to control her limbs to get out of a chair without help or shuffle slowly with her zimmer frame, now dementia is noticable caused by Parkinson's. I now dress, wash, feed and care for her most of the time.
My biggest gripe is that the lack of information from the hospital doctors or nurses, our GP and practice nurses on the available help and assistance that has cost me a lot of money buying equipment that could of been provided free of charge! Why is there not a pack explaining all this at first diagnosis?
We now have been supplied with a medical bed, commode, tilting chair, adjustable table and chair for eating and a bath lift, all items I'd purchased myself commercially, the supplied items are superior and better for her condition.
Fortunately I've always been a positive person and still in good health but I'm now starting to feel the strain as she becomes more demanding. I am aware that I have to look after myself and I will walk around the block when it gets on top of me, plus I have friends round each week for a bridge session, I manage a game of bowls on a Saturday morning whilst a neighbor visits and I still get a few longer walks in each week.
On top of all this at 77 from being a typical lazy guy that only took the bins out every week, I now completely run the house, shopping, cooking, laundry etc, I've hired a gardener and a cleaner and a hairdresser and chiropodist both come regularly.
Without realising it my wife frequently asks me to do things either whilst I'm doing something else or when I've just sat down for a break, because she can't raise her head her speech is muffled and quiet, she is also now hard of hearing even with new hearing aids so I speak louder if not in line of sight, I am then sometimes told not to shout and she'll get upset and cry! This is upsetting for both of us. Although she has a wheelchair she has no strength to manoeuvre it herself so I have to push it everywhere we go, I often offer to take her for a walk round the block or the local park but 95% of the time she declines preferring to stay at home. She does go to a craft class for 4hrs and knit and natter class for 2hrs each week which gives her the vital social interaction.
She says she is fine but she's frustrated because of all the things she can no longer do, I've tried smaller sized large piece jigsaws but I help as she can't seem to manage them now.
We have not been away since pre covid, but are planning to attend a wedding in October at Aylesbury and continuing on to Wiltshire and Somerset for a week staying with my sister who has a bungalow. A much needed break we're both looking forward to, I just hope she doesn't deteriate more before we go, she eats by lifting food up into her mouth, sucking from a spoon. She drops a lot, will be fun in the hotel restaurant and reception.
There is so much more but I'd better get to bed and get some sleep.
My biggest gripe is that the lack of information from the hospital doctors or nurses, our GP and practice nurses on the available help and assistance that has cost me a lot of money buying equipment that could of been provided free of charge! Why is there not a pack explaining all this at first diagnosis?
We now have been supplied with a medical bed, commode, tilting chair, adjustable table and chair for eating and a bath lift, all items I'd purchased myself commercially, the supplied items are superior and better for her condition.
Fortunately I've always been a positive person and still in good health but I'm now starting to feel the strain as she becomes more demanding. I am aware that I have to look after myself and I will walk around the block when it gets on top of me, plus I have friends round each week for a bridge session, I manage a game of bowls on a Saturday morning whilst a neighbor visits and I still get a few longer walks in each week.
On top of all this at 77 from being a typical lazy guy that only took the bins out every week, I now completely run the house, shopping, cooking, laundry etc, I've hired a gardener and a cleaner and a hairdresser and chiropodist both come regularly.
Without realising it my wife frequently asks me to do things either whilst I'm doing something else or when I've just sat down for a break, because she can't raise her head her speech is muffled and quiet, she is also now hard of hearing even with new hearing aids so I speak louder if not in line of sight, I am then sometimes told not to shout and she'll get upset and cry! This is upsetting for both of us. Although she has a wheelchair she has no strength to manoeuvre it herself so I have to push it everywhere we go, I often offer to take her for a walk round the block or the local park but 95% of the time she declines preferring to stay at home. She does go to a craft class for 4hrs and knit and natter class for 2hrs each week which gives her the vital social interaction.
She says she is fine but she's frustrated because of all the things she can no longer do, I've tried smaller sized large piece jigsaws but I help as she can't seem to manage them now.
We have not been away since pre covid, but are planning to attend a wedding in October at Aylesbury and continuing on to Wiltshire and Somerset for a week staying with my sister who has a bungalow. A much needed break we're both looking forward to, I just hope she doesn't deteriate more before we go, she eats by lifting food up into her mouth, sucking from a spoon. She drops a lot, will be fun in the hotel restaurant and reception.
There is so much more but I'd better get to bed and get some sleep.
