Ready for respite again and looking to the future

[northumbrian_k]

I have booked a series of short break (residential respite) stays for my wife through to the end of November this year. On Thursday next week her home support worker will drop her off for a 4 night stay. I'll be able to use the time to finalise dog boarding arrangements, do some bike maintenance, and find out the best way to pack my new bike bag for my trip to Majorca in April. I'll probably do some cycling, maybe go out for a restaurant meal, remind myself what life used to be like and, most importantly, have some time to sit and relax.

Unfortunately I also intend to start the almost unpalatable task of trying to find a permanent solution to our worsening situation by visiting a number of care homes. I am fast coming to the conclusion that I am unable to give my wife the proper level of care and support she needs. It is not through lack of effort, but as every new day seems to bring a fresh challenge - to add to all the others - I am in danger of becoming overwhelmed. The social care lady who carried out an assessment last week suggested that more support, especially with my wife's personal care, would be of major benefit, at least in the short term. But the problem is finding an agency that has the capacity to provide what is needed.

 

[Grahamstown]

But the problem is finding an agency that has the capacity to provide what is needed.

This seems to be the problem over most of England, Scotland sounds better. It is heartbreaking that the proper support for people with this terrible illness is so low down on the list of priorities when it affects so many. I wish you well in your search.

 

[AliceA]

My best wishes too, your breaks sound good. I hope you get the care. X

 

[marionq]

Yes it is a difficult time. Personal care is free in Scotland for those who need it. The only weakness is that times are arranged but the PWD may get up earlier or not want to get up at all. I find that I am involved in the care getting John up and toileting and sometimes with the showering etc well under way by the time carers get here. I do appreciate the human contact though.

For the last two weeks John has been in hospital with an infection which caused a series of falls. He is now so weak that the two week respite I was booking will have to be cancelled. He is not strong enough and I feel that when he comes home I will have to try and build him up. I doubt he will be strong enough to go back to his daycare either.

So NK make use of your break to live a little because the future is so uncertain.

 

[Joyt]

To be blunt the challenge of looking after your wife will only get more challenging. That will take an increasing toll on you. It seems unthinkable, when you are shouldering such a degree of care, to contemplate handing it to someone else full time but you are absolutely right to think in the long term. We manage the increasing demands on a day to day basis trying not to think of the damage it is doing to us, the carer.

 

[charlie10]

@marionq - so sorry John is in hospital....it must be so hard for you both. Take care of yourself and I hope he makes a good recovery

 

[nestle]

I too am thinking to the future , it's not easy but have eventually come to conclusion it is kinder to PWD better prepare carefully than have an emergency or snap . Wishing you well