Hi, I just need to vent. My husband has mobility issues and I’ve been his carer for about 5 years. He fell and broke his ankle in November. In January the hospital consultant said his ankle is fine. But because he’s been in bed for the past 5 months (nearly) his mobility is even worse than it was before. He’s in a hospital bed in our living room. Physiotherapy is happening once a week. ONCE. I know resources are tight and the therapists themselves are fine, but ONCE a week? This is so, so frustrating. He’s being moved into a chair via a hoist a couple of times a week (I had to hire carers) and then back to the bed again, but it’s not enough. Our house is a disaster, with furniture being shifted around to fit the bed, big medical chair, and a hoist. He’s doing his exercises but this really isn’t progressing. Does anyone else struggle with getting the help they need? I also work full time, thankfully from home, but I am so, so stressed. We have no family nearby and this is all on me. Sorry to vent, but I’m in tears nearly every day and don’t know what I can do to move this along. I even looked up private therapists but couldn’t find anyone. Any advice would be appreciated. Thanks for listening.
Hey Butterfly… I totally understand. My hubbie has Parkinson’s and his mobility has rapidly decreased. He can still move but needs help … I can just about manage and we are fortunate to have a strong 19 year old son but if not, I would have had to give up and say he needs to go into a home which would be heartbreaking.
Have you had a adult care needs assessment from your local authority? It feels like you need a proper care package with carers coming in 4 times a day. If his savings are under £23,000 then it should be funded by the council. Please note that they CANNOT include your house in any financial assessment as you live there too… sometimes people worry about this but the rules changes over 10 years ago.
I found what works was to ring the relevant services and basically say I couldn’t cope anylonger at home and that a care home would need to be found. Do this with adult social services… there are waiting lists but you can be escalated up… say that you can’t move him, it’s too difficult and that you need support or he will have to go back into hospital and then into a care home. NONE of these services want to fund people into care homes so if they think you as the main carer are about to give up and have a breakdown and be unable to care, they will pull their fingers out! This worked for me and we got a care needs assessment and a social worker round within 3 weeks. As it happens, we would be self-funding as my hubbie has significant savings so I decided that if we are going to pay, I would rather pay private carers to have more control/say rather than use the council ones BUT I wanted to get on their radar in case we do need them to help us find a care home.
Because I have power of attorney, I decided to start using his savings to pay for private carers to come in a couple of times a week to help… this helps me stay sane.
BUT, you really should get extra help from the council - once you have a hospital bed and a hoist it’s much more serious.
AND, you should be on the list of the district nurses too.
It’s one of the most stressful things - that we have to basically get on the phone or go into offices and push for the support we should have.
The other think is I have found the neuro rehab team - they are the team of physios and OTs who come out to our home weekly (yes it’s just once a week sadly) VERY helpful for getting other services - because they see him in his home, they can see the decline and they keep my hubbie’s Parkinson’s nurse up to date… and they also give me good advice. Be honest with the physios and ask for their support.
Honestly, my experience is that untill you basically ring up the services and say you are on the verge of a nervous breakdown and you can’t do it anymore, they will just ignore you or keep you on some god awlful wait list.
I think some people worry if they are honest that social services will deem them unfit and take their loved one away but a) they won’t think you are unfit honestly and b) they don’t have any space or other option anyway… even if they did! Unless they found he was neglected or abused they want you to keep looking after him to keep him from having an expensive care home place… so if you are honest about how stressed you are, they will want to support you and the cheapest option is carers coming into your home 4 times a day to do personal care, meds, they can do his physio with him and then can have a break 4 times a day.
Hi, thanks for replying. I’m sorry to hear about your husband’s Parkinson’s. Now I feel a little bad for venting because my husband WILL get better and a little more mobile, I’m just frustrated at how long it’s taking. This same thing happened in 2022, he fell and broke his ankle, and was in a hospital bed at home for 3 months. He recovered well enough to use a walker around the house, with some support from me (personal hygiene). He was at this stage when he fell again, and I suppose because he hadn’t recovered completely from the first time, this time is much worse. 5 months in bed. And let’s just say he’s not a good patient, saying I don’t support him, etc etc when that’s all I’m doing (and I’ve told him so). I pretty much have dropped everything to stay at home in case he needs me.
We got social services involved last time and paid for daily carers. But I make a decent salary so we have to self-fund. We have some savings but that’s our retirement money and really don’t want to use it, therefore I’ve taken on most of the caring. I guess it’s getting to be too much now.
Anyway thanks for listening and offering support. It’s helped me a lot.
Hi Butterfly, just quickly, when they assessed your husband last time re funding for carers - did they just look at his finances or assess your finances as a couple? It’s my understanding, though worth checking, that as you are earning it’s better to get them to just look at his finances and then your wages won’t be taken into account.,
Unless rules have changed recently, Melly is correct. Assessors should explain that an assessment can be done either singly, or as a couple. It’s your husband’s choice, not the assessors!If he has under the capital limit, the assessment looks at income only. If you have a joint bank account, only half counts as his. Mum lived alone, but was housebound. After she lost her Halifax pass book the second time, the manager had to visit her at home before an other was issued. He recommended a joint account so I could manage it for her. Later, this meant that rather than pay for all her dom care, she paid nothing! After she moved into residential care the council overcharged her £8,000, which I later reclaimed for her. As a general rule, never trust anything a social worker tells you about money. Always double check!
Hi Melly, he hasn’t worked since 2013, so it’s been my salary since then.
Hi Butterfly, yes I realise that; what I’m saying is - I think is only your husband’s assets that should be taken into account for the financial assessment for his care. However, I suggest you check this with the helpline by emailing advice@carersuk.org .
Hi Butterfly, your situation sounds so similar to mine. My husband spent 4 months in hospital bedbound after having had limited mobility at home prior to that and then several major health complications resulting in the hospital stay. He was then transferred to a physio rehab centre to learn to walk again and has been there for the last 2 months. He is improving slowly but will never be fully mobile and will always need some form of care.
The hospital did try to send him home at one stage and were going to provide a care package of carers 4 times a day. I had to fight for them to keep him in hospital whilst they found a care home place for the physio as they were going to just send him home bedbound!
I hope things improve for you and you get the help you need.
Hello,
I know exactly how you feel. My husband (has MS) lost what mobility he had due to being in hospital for a month.
We were assured of physio but waited 4 WEEKS until someone came. Then they only visited for 6 weeks but unfortunately couldn’t get him mobile again.
Like you, our dining room is now his bedroom although he does get hoisted every day.
We have to self fund his care which is draining all our savings.
Have you asked for a reassessment?
Carers UK have lots of advice too. Perhaps contact your local branch?
Caring is a lonely job, but well done for joining this group. It does help!
Take care.