I am still despairing!

Old age can be horrible. I was just watching the 99 years old doing the loop the loop on tv. I wondered how on earth she had the stamina. I’m sorry for your situation OP but being bitter hurts only you. Get as much help as possible and ignore the brambles as I do. Carers do cost but have you claimed everything you can. Attendance allowance etc. also call in an estate agent for an estimate without bothering to repair or tidy up. It might give your husband an incentive to buck his ideas up. And keep saying as I do This too will pass.

I feel sorry for you.

I do think your DH could have done more for himself.
I dont understand why people dont, personally.
I do think sometimes it is because of fear.

His not walking, to me, does sound like Parkinsons.

And he has had Tias.

With respect, I cant see you both moving house anytime soon.

Not sure what else to say really[I did read at least some of the old thread].
Look after yourself.
You are in a difficult situation.

Could a local Church help with your up coming operation and coping afterwards?

Madmeg, so sorry you are still struggling, but I totally understand, It is impossible to know if to leave would be the right thing, isn't it? I just try to remember that my house is so comfortable, and is well maintained, as my husband is great at DIY. I now ignore the looks of disapproval and the tutting if I am planning anything with my sister, I will never feel totally at ease with my plans. But husband would feel the same whether I go out socially or not, so why shouldn't I do some things for myself? And Stansgran, your comments are really good and insightful. So many people just shrug and say, leave him, but there is so much to consider when you are in your 70's, and uppermost is your physical comfort, and having a companion. Good luck, yes, this too will pass.

I hope that having internet chums helps in some way, even if it’s just a way of getting it off your chest every now and again. I know being able to chat to people really helps me; a lot of us got locked out of another forum a week or so ago and we all said how much our internet friends meant to us ( if someone doesn’t post for a while we worry until we hear from them). Alas you must feel a bit down referring back to your life ten years ago and realising that nothing has improved. Can I just send you a virtual hug …

Hi Madmeg, as you mention you have grown up children, would one of them be able to help with your forthcoming operation? Even if it was to help get you there or back and maybe a bit of help afterwards?

Did you tell the physio lady that your DH cannot get the rollator into the cloakroom?
If you let her know, she should be able to come up with a solution so that the downstairs cloakroom is accessible to your DH. If your DH can access the cloakroom, it will make a huge difference.

We don’t even have a downstairs toilet, we have one outside. We were lucky, our district council installed a new stairlift for my DH without any means testing after his hip operation.

One DD is new first-time mum at age 43 andd lives 180 miles away. The other is "only" 30 miles away (country roads) and the hospital is 20 miles the other way so it would be 100 miles round trip for her. The mega problem is she suffers from Fibromyalgia which can (and does) strike with no warning such that she can't drive at all.

I can't see that he could get into the little cloakroom to use the loo. As I said he is permanently attached to his rollator now and even if he could get it in the loo he wouldn't be able to reach the toilet bowl to urinate (or anything else!). It would terrify him even if he could physically do it. Even if he just used it to empty his bowels he isn't able to stretch behind enough to clean himself - that's my job now.

At the level that we were advised to have carers it was costing us nearly £4,500 every 4 weeks. AA covers only 10% of this even at the higher rate. We spend that easily on incontinence products, extra washing/drying/water and heating and various mobility aids. Lots of other things you don't think about like Vitamin D tablets. He has problem feet so we pay for home podiatary. I've yet to investigate home dentistry. And it is down to me to cut his hair and shave him.

As you can see it is past 1 a.m. now, the first break I've had in two days. Plus I'm a tad sad that yesterday I was told of the passing of a very, very close friend who used to live nearby but moved back to her Birmingham roots where she developed dementia and had been living in a care home. I would love to go to her funeral, I know her family well, but can't see me managing it if I can't find carers to look after DH.

Thanks for all your moral support, it means a lot to me.

Could he go into respite care while you go to the funeral? Also when you go for your operation. Perhaps one of the SiLs could take you?

I don't mind driving myself to and from the funeral. Only one SiL is in our area and is not in a flexible (or well-paid) job. The hospital is as it would be for DD - 100 miles of driving and sitting around for an unknown length of time. I can't put that on someone else. It would have to be a taxi, at enormous cost (but isn't everything an enormous cost these days?).

Can’t you use hospital transport ? We also have a special taxi situation here which is cheaper than normal(you have to be a member) and the driver acts as your helper and it’s much cheaper than normal fares . There are charities too that are well worth a chat with they can sometimes help with volunteers
Have you told your story to Age concern we got good help for my mum from them
Can you get some respite care for your husband
Do you have a SW they were so helpful with all sorts of things we didn’t know you could have

Have you had an assessment by Social Services? They are required to give your DH an assessment and also to assess your needs as his carer. If you haven’t, then phone your local council’s Adult Social Services department and tell them, as you have us, just how desperate you are. They should be able to find ways to help you or at least give you some advice.

It sounds like your not fully accessing all govt help maybe get help with this part of it I wish you well

Sadgrandma

Have you had an assessment by Social Services? They are required to give your DH an assessment and also to assess your needs as his carer. If you haven’t, then phone your local council’s Adult Social Services department and tell them, as you have us, just how desperate you are. They should be able to find ways to help you or at least give you some advice.

So sorry to hear that things have not improved 💐
I was also wondering if you have accessed as much support as possible from Social Services?
You may have done, so sorry if saying the obvious.
Re the Vitamin D tablets. Could you get these on prescription from the doctor?

As I don't have any mobility or similar issues I am not entitled to any help with transport. Our income is also a good one so not entitled on those grounds either. My DH uses a community ambulance to get to his neuroogist 30 miles away. We are always being let down by it and they sometimes insist he sits in an ordinary seat despite being regarded as "non-transferring". Some of the crew are quite careless/dangerous and sometimes downright cruel. We submitted a formal complaint over one team but heard nothing at all in response, not even an acknowledgement.

I'm not aware of having had a formal assessment of needs for either of us but I was given a huge form to complete but it was clear that I wouldn't qualify for anything. Today I asked the visiting physio about a ramp for the front door but we would have to pay for it. I would gladly pay but she didn't think it would be suitable. She suggested grab rails but I know he would be terrified of them on their own.

I'm not aware that we have a social worker.

Respite care is v expensive and I have been told that they would not supervise him walking with his rollator due to health and safety reasons. Last time he was in hospital (less than 24 hours) his body totally seized up cos he wasn't encouraged to get out of the bed at all and it took him nearly two months to recover from that - a major setback that I dare not risk again.

Also sorry to read things have not improved for you over the past 10 years.

You are fortunate enough to have a good income so if lifts to and from hospital are not available for your own hospital admission - order a taxi- it at least should be reliable with a reputable taxi firm. Perhaps there is is a possibility of him going to stay with family afterwards whilst you to recuperate. If not cross that option off the list.

Very few care homes offering respite placement will have sufficient staff to supervise your husband on a one to one basis if he uses his rolator frequently. Is he safe using the relator or at risk of falls currently? Those risks won't change whilst you are not there. To and from the loo out of bed to communal areas etc yes carers in a care home will supervise. However if t=your husband is considered at high risk of falls using a rotator they may determine a wheelchair or a hoist, or a Sara Stedy stand aid is safer to use for transfers and moving and handling interventions. Your physiotherapist will be able to advise and perhaps liaise/advise on care homes offering respite placement.

When you are admitted to hospital you have several options available regarding your husband;
1) leave him at home alone with the current carer half hour visits ( or you can increaser the number of visits) at his own risk in between visits.
2) He goes to stay with family
3) He goes to stay in care home respite care
4) He has a live in carer for your hospital stay and recuperation period.

Discuss the pros and cons of all options with your husband and decide together your preferred choice. All involve some expense and you have the income to pay for your preferred choice. Risk of falls regarding your husband's mobility can be mitigated but probably not extinguished unless he agrees to be immobile and none weight bearing for a period which as you note also carries risk. You can't avoid risks or pretend they are not there just work out how to mitigate and minimise them in all your circumstances alongside your physiotherapist expertise and advice.

Notwithstanding you have a good income to buy the care and support you and your husband prefer, in your current circumstances you are entitled to Social Services advice and you are now aware you are entitled to a Local Council care assessment for your husband and yourself as his carer and be given a copy. Age UK has information about this as does your local council. Make contact asap to get this organised before your hospital admission date comes up and explain that admission and your own health issues also.

Good luck with your decision making and with your own impending surgery and I hope that goes well and you have a speedy recovery.

Madmeg what an awful scenario for both you and your DH.
You need to take the initiative and move to a bungalow so that you can both have a bedroom on one floor, no more beds in the lounge.Have a walk in shower put in, and buy a bungalow with a small garden.

Oreo, I look at bungalows with small gardens near to our DD every day! I am fine in any shower (but a walk-in is sensible) but DH will be too frightened I am sure. It will have to remain as stand-up washes as I do now. Hair-washing is a laugh!

Today I've been researching dentists who can do home visits - not a lot of choice as the equipment is so cumbersome. I haven't yet got anyone to answer the phone!

Despite all the emotional difficulties I am trying to do my best for him. No-one deservices to be abandoned even if they have contributed significantly to their position.

Meg xxxx

Madmeg would you consider some live-in care - maybe on a short term basis? At least initially?

My mother-in-law had live-in care for several months after her stroke.
It was expensive but probably the same as carers 4 times a day paid for privately.

We signed up with an agency who checked training credentials and right to work.
They operated like a match-maker and offered us several people who they thought suitable - and then we interviewed remotely.

After some not great experiences with one set of carers from another local company (popping in 4 times a day) we found this company very reliable and we found great carers through them.

We paid a fee to them for each week we had carers living-in and then we paid the carers directly.

We also paid the carers transport (by train) to my mother-in-law,and back home afterwards.

The women who came to us were truly lovely and we will be eternally grateful to them.
The carers are entitled to 2 hours off in the daytime and need to sleep at night.
They are happy to get up now and then but if it's regular you need to pay for their extra time.
I understand they have some men on their books too by the way. All carers are self employed so you don't need to worry about NI etc.

We hired through Patricia Whites.
www.patriciawhites.co.uk/live-in-care/
They are a London based company but have carers willing to travel.

We were absolutely honest with Patricia Whites (and the carers) about what to expect.
They were happy to cook, do some light jobs (such as hoovering and putting things in the washer) and gave my mother-in-law a good quality of life through difficult times.... and WE (my husband and I) felt supported and much more able to relax

I confess it was all very scary trusting the company and the carers at first but I can't begin to say what a relief we felt.

I'm happy to chat privately if you think this might help.

Thinking of you.

Madmeg- I hope all is well. Nobody has been able to come up with magical solutions as you predicted but posters have kindly offered varying advice.

Has any of this helped you make your decisions about what works best for you?

Hi Madmeg, it does sound hard but I am unsure why you have managed only 3 showers/hair washes for yourself in the last 4 months? Have I read that right because you do obviously need to look after yourself too.
I would recommend that you contact Adult Care Services (social services) with a view to getting an occupational therapy assessment where they can look at access to your home and adaptions to your washing and toileting facilities at least. Pod type shower units can be fitted almost anywhere now and can be shower chair accessible plus toilets have self clean / bidet type attachments - it’s worth knowing what’s available before dismissing it all.
It’s easy sometimes to just soldier on as you are but there often are alternatives if you ask for help, not cheap though I realise.
Good luck.💐

Forty years ago, when my hubbie had MS, we had a special shower unit installed via local authority).
He transferred to a special wheelchair which then wheeled into this shower, which meant he was able to have a daily shower by himself. When the MS got worse, he did have to use a hoist (With carers to do the transfer).

So, sure there are many more of these nowadays. No reason for Madmag's hubbie not to be able to have a regular shower and for her to use it also.

I am so sorry you have too much to cope with, how can anyone 75 be doing all you do. Regardless of how your husband feels you need to move. It will only get worse. What happens if you are ill? You decide what will make life easier for you and go for it. When you have your mouth operation arrange care for husband.and get yourself right.
My neighbour very ill herself now and with Carers, refused to have her husband home after a hospital stay, her two children never spoke to her again but they never helped or visited and they wouldn't have him. He had an affair and had only been home a month when was diagnosed as terminally ill.