Hello from the distant past. Some of you will remember me and a lot of you are new since I last posted.
Life is very different, my husband F is home with CHC funding, glad for that. I built a suite for him as 7 months in hospital and nursing home was too long. The CHC took months and when he went from hospital the nursing home it was done all over again. Mindless. He was able to come home because a care agency was found that would fulfil his brief. They lasted 10 days. The health board had to step in with emergency care. I am so glad for that first 10 days with agency because we are now 8 months on and still have emergency care. They cannot pull out as long as he is at home. They are all very good. However, 4 double handed visits a day, F cannot do anything himself now, means that we have had 66 different carers through the door. That's not including therapists, Marie Curie and GPS. The visit can be at anytime in a three hour block starting with the first sometime between 8am and 11am. And so on throughout the day. Exhausting.
I have been awarded 8 weeks respite a year, 8 months on and I have had 2 weeks. Just had second week at Hospice that has the only bookable respite bed in county.
After a battle that included letters to Government ministers I have had a carers assessment and been awarded 2 blocks of 3 hourly sitting service. That's wonderful but why does it have to be a battle?
The respite bed is for 1 week and has a 5 month waiting list. I don't know if I am going to make it to the next week at the end of September. I had a cunning plan....spend some pension to buy in extra help.....thwarted. It's not allowed as we get CHC. Incomprehensible.
So damn hard. I am having pressure put on me to put F in a home permanently. Won't do it. I cannot even let him go to hospital for longer than 2 weeks or the emergency care team won't come back and he will be bed blocking for goodness knows how long. Like wading through treacle.
They want people to be cared for in their own homes so why make life so unbearable for the carer? There is one positive thing about having to be a performing seal as well as a carer, it keeps my mind occupied. I don't have just be totally immersed in doing everything for F and trying to figure out what he wants from facial expressions and watching 66 different people pull, prod, and poke.
The care system is broken. Don't just tut and shake ahead saying oh dear it's bad. Rio something you powers that be. I strongly believe it needs a complete change. A new system altogether. This isn't political by the way. I am in Wales, Labour government. I bet those of you in England and Scotland find the same problems.
So this is why you having heard from me for while. I have been reading though and it all helps. Those of you who are just starting this journey through purgatory , be prepared, life will never be the same after you have looked this monster in the eye.
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hellebore
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Wow Hellebore what a mother of roller coasters you have had to ride, unbelievable. The care industry seems to be in crisis, many of Ben's carers are at a he rid of their tethers, zero hour contracts and always being asked to do extra calls. One poor girl was doing 60 hour weeks. Disgraceful. I state again that the government need to step in to subsidise carers hourly pay, give them more stable and secure working conditions and raise the status of the caring profession, it is a very responsibly job and needs to be recognised as such! There I feel better to get that off my chest.
Your post makes me realise what may be in front of us as the journey takes hold, not sure I could cope with that many fold coming in every day, sounds horrendous.
Look after yourself and hope you get a bit of downtime.
So right I hate so many people coming in my home. It makes it hard to get things done its like it is a full time job. I am thankful for the help but not happy giving up privates. God Bless
Oh dear, Hellebore. What a morass! I am ever more grateful for the help we had through the VA here in the US, and can't imagine how we would have coped otherwise. They arranged for a private agency to give us 20 hours a week of a single (quite mad, but reasonably reliable) aide and I paid separately for 24 hours a week of a stalwart angel found for us by a friend. I was on my own after I got home from work until the next morning, but I was able to keep working more or less full time until the last month. I hated the loss of privacy in my home with the various people coming through. I can't imagine what it is like for you with so many strangers in and out. And to have to fight for it all! You must be exhausted. Hang in there. Peace, Ec
Thank you Katiebow. You are absolutely right some carers are very badly treated. I h .ave found there are 3 types of carers; those there naturalist but don't realise they brilliant, those that are efficient but think they are brilliant and those that just do not want to be there.
I want to start a debate. No more complaining. We all know the care system is very broken. Let's do something instead of shoving the problems around like a bag of flour without eggs. Get the cake baked.
I hope that makes sense. This is why I don't post much my brain is so addled now. I am supposed to be the well one!
Hellebore hello. I think I am perhaps someone you don't know? I only found the site in October. Sadly my husband died in February.
I can relate to so much of what you said in your post. They really do make life hell when it's already that as far as you are concerned? They kick you when you are down. My husband eventually got CHC funding but it wasn't enough for the care he required. He died a few weeks later. Like you I wanted to top up the funding but was told you can't do that with CHC funding!! It beggars belief? People look at me as though I am mad when I tell them all we went through. The problem is you don't know what you don't know? Nobody has a clue until they find themselves in the middle of all this.
I don't think people, carers and nurses for example are treated properly. Carers came and went in our lives. Mainly because they were treated so badly by the agencies they worked for. That really needs to be sorted out. Nurses are not paid enough yet we have CEO's on obscene amounts of money. Another thing that should be sorted out.
You seem to have managed to get good carers but sadly having so many takes your life away and your husband's dignity too? I really have no easy answers for all of this. It is heartbreakingly sad though.
Marie. Yes no answers. I do think some of the managers in the care system practice a "preserve the priesthood" approach. However many assume a carer is someone without a brain a bit like the way pregnant mums get treated. I often find forms or documents left behind in care notes that I haven't seen before or am not meant to see.
I am taking a proactive approach now and taking the lead. I make the decisions now. It takes every once of courage to say no to some things put to me but in F's last month's I know he would want me making those decisions for him that he can no longer make. That's a marriage.
Thanks for taking the time to post. My heart goes out to you. My husband has first had minor symptoms , only I noticed, 2 years ago. His care is getting harder, but nothing like what F is going through. I am not able to get help unless I pay for it or he is ready for hospice care. It all frightens me to death. I do have to make different living arrangements as our home is not a. Good place to care for him.( too many stairs etc.). It is all awful . Can you tell me how long ago your husband began symptoms. This site has been my only help with getting an idea how his disease mt progress. It seems to be going fast. One day he can do something and a month later not. You are amazing.
F has had CBD since at least 2010. A gradual onset with personality changes then mobility. The decline sped up considerably two years ago with changes every three months. We now have changes every two weeks. Today the only stuttered word was wheatabix. He has slept for hours. That is pretty much all he does now.
The worst time for me was the transition period when he was in denial and still wanted to do everything obsessively. Now it is emotionally exhausting but it's not the carereing that is the hardest it's the deciding not to care. I have had to make those difficult decisions for F that he can no longer make for himself.
He will not be going to hospital again, it always does him more harm. Finding the courage to say no has been more difficult than anything else I have ever done. It does though make the emotional stress less exhausting now We have moved into the next stage.
I have to say that all those on this forum who have gone before have left a wonderful training ground for us all to prepare.
My heart breaks when i read such eloquent posts. The experiences vary throughout the UK and there is no uniformity in care provision. We are in a similiar stage , bit broke now as all alterations had to be self funded , not that we had any savings rog had not worked from the age of 58 , but the assessment was based on income and we were just over!
On a positive note though our experience wIth CHC funding although traumatic and lengthy has been OK, after initial teething problems the care company are delivering the goods.
I demanded live in care for Rog when i have respite, PSP does not lend itself well to nursing homes! It works well , cheaper for the CHC, i go every 12 weeks and i would be giving up without it, maybe worth thinking about if no beds available.
Poor you, know just how you feel. Been a carer for PSP 5 years, and I am well and truly ready to throw in the towel - trying to think of new ways to escape. I hope you continue to find the strength needed.
I have been fighting this battle for my husband for 15 years. This is in Canada it is all the same bureaucracy every where. I been pressured to get my husband into long term care. I will not do it. If he winds up in hospital I will loose his self manged care. Yet they are so short of beds they need to send him to another town where ever there is a bed.The struggle is real. I am not well myself and do not have the energy to fight for every thing. Where do they find these people to work for government agency's that act like robots spitting out canned answers to every request. I guess in the end we both will wind up in different care homes. Keep up the good fight as long as you can. I feel your pain.
Don't you just want to bang their (cgcs ) again st a brick wall. You are well read on this care business, have you ever found it working as it should anywhere?
I called my CHC office today to ask where they had on their list for respite, (I am planning g early). Their response produced 3 nursing homes and a hospice. 1 home I refuse to use for good reason. The other two I called. No bookable bed only the rarest off chance in between permanent residents.
We have 8 weeks respite allotted, and accounted for, for the year. I have used 1 in eight months. They do t count the hospice. The remaining 6 cannot be carried forward so into which budget does the surplus go? The only respite bed in the two countries is one offered by the hospice.
I am lobbying for the health board to maintain a bed at three nursing homes on a permanent basis. That's a start. I am also going g to try and get 3 respite beds in a new unit at out beloved cottage hospital. It's a slog but I have told all of you now so I am going g to have to do it.
Community and Cottage hospitals should never have closed. This is the service they should be providing.
The NHS must provide appropriate care and treatment where they have agreed a clinical need. It is not acceptable for them to say we only use these places and not those.
They block book beds in Nursing homes and only they have access to them. They get a discount rate for doing this.
The problem is that to stop bed blocking in hospitals they are now discharging more and more people to these block booked beds and thus they are often full. Add to that there are insufficient Nursing Home beds in the country as the baby boomers are now of an age where they are increasing demand way beyond supply.
Amanda (Satt) is good on this one - hopefully she will step in.
However you can identify a bed in a unit you have found and ask that they fund it. Technically they are obliged to do that as the NHS Charter specifically excludes cost from the equation of clinical needs and treatment. If there is a need than they must meet it. I would go hunting around the Nursing homes, visit them and explain your husbands needs and then make a note of costs. Ask them also if they have any CHC beds - the term used for these block booked beds. The CHC will want to stay with block booked beds - but they must meet your husbands needs even if they are all in use.
I hope this helps a little.
BTW - Age concern is a good source of advice on this.
Hi Kevin, sorry little late reply I g, a difficult day today.
Nursing homes - I have just about got my head around what you said but here in my part of Wales there is a shortage of homes. I have phoned every one in the area covered by the CHC and none have a bootable respite bed. The majority w/o t even discuss respite at all.
It transpires that something has changed very recently. The emergency support team that I have instead of the carers agency (because there isn't one) has been changed to a proper agency. They are now dealing with chronic long term care needs. Better than nothing I suppose. Why now? They have also suddenly been given a lot more cases that have been sent home from hospital. Why the sudden rush, is heatwAve coming?
I would relish banging on the local health boards door and demand a bed but they just don't exist. My biggest problem right from the beginning is that they say they are meeting F's nursing needs but the respite is for me. I had this when I first asked for a carers assessment and was refused because F Gets CHC and it was social services that do the assessment. I have sorted that but had to get the Welsh Government to point out the law to the local authority. Now it's just the health board it's tougher.
I hope this makes sense. In the mean time, he sleeps and sleeps.
Yes it makes sense. The more the NHS goes into crisis the more they are pushing work into the community. And, the community resources just aren't there and they are saturated.
I went without a care agency for three months - I was on my knees. The last one was so appalling we had to sack them. We wrote to the CQC too, they even did an undercover assessment! They were unsafe.
I would write to my MP in your situation. I have very deep sympathy with the funding and staffing crisis of the NHS. However they are required to offer these services. A letter to the MP means that there is a high level enquiry. This helps the NHS prove its need for further funding.
FYI - The MP automatically opens a Ministerial level request for information... It is taken very, very seriously.
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