It's been an awful day

[Old Flopsy]

My hubby is in hospital being assessed for a care home. I rang the ward yesterday after I found his denture and I was asked to take in two changes of day clothes, and jamas etc so I put the dentures in too. My friends kindly took the holdall into hospital for me- I couldn't face going there and not being able to see him.

But then the phone rang and the nurse said hubby is anxious today and she put him on the phone- it was lovely to hear his voice. The nurse said he has a phone by his bed and I can ring him whenever I want, and he has a card on which he has my home number so he can ring me.

I thought this was a blessing but now I am so concerned and upset- he has rung me five times now telling me he is in hospital and asking me to go and pick him up as he can't stay in hospital. I used @canary tactic and told him the car is in the garage being mended. He sounded so disappointed.

Oh this is so distressing as I know that my back is agony and I can't bring him home . I can't manage 24/7 to keep him safe.

The hospital social worker rang to say he is fit to discharge and told me to decide which care home I want him to go for up to 6 weeks into respite in. I hadn't realised it was up to me to research and I have been on the phone and internet all day- I'm exhausted. The top up fees are hefty- on average an additional £240pw to be paid by a third party- from my own savings or a via a deferred charge on our home- as his pensions will be swallowed up.

The social worker later rang me to try to get me to use the cheapest home, and avoid top up fees, but it's in another village a few miles away with no bus service so when I can no longer drive it's a problem. The local authority will fund respite but then it's up to me to arrange payment for the long term care.

The stress is getting me down and I am trying so hard to stick to the plan to ensure his future, and mine.

 

[imthedaughter]

Oh no so sorry to hear this latest development. The top up fees are very difficult and I have heard best avoided but it sounds like this cheaper home is a bit out of the way. Are taxis an option? Appreciate that is an additional cost.

This part is so stressful. I remember trying to arrange a place for my dad remotely and it was so stressful. Even if you don't make a final decision, can you choose a place for respite? Or try the cheaper one and see if it works for you?
Let us know how it goes.

 

[NotSuperMan]

My hubby is in hospital being assessed for a care home. I rang the ward yesterday after I found his denture and I was asked to take in two changes of day clothes, and jamas etc so I put the dentures in too. My friends kindly took the holdall into hospital for me- I couldn't face going there and not being able to see him.

But then the phone rang and the nurse said hubby is anxious today and she put him on the phone- it was lovely to hear his voice. The nurse said he has a phone by his bed and I can ring him whenever I want, and he has a card on which he has my home number so he can ring me.

I thought this was a blessing but now I am so concerned and upset- he has rung me five times now telling me he is in hospital and asking me to go and pick him up as he can't stay in hospital. I used @canary tactic and told him the car is in the garage being mended. He sounded so disappointed.

Oh this is so distressing as I know that my back is agony and I can't bring him home . I can't manage 24/7 to keep him safe.

The hospital social worker rang to say he is fit to discharge and told me to decide which care home I want him to go for up to 6 weeks into respite in. I hadn't realised it was up to me to research and I have been on the phone and internet all day- I'm exhausted. The top up fees are hefty- on average an additional £240pw to be paid by a third party- from my own savings or a via a deferred charge on our home- as his pensions will be swallowed up.

The social worker later rang me to try to get me to use the cheapest home, and avoid top up fees, but it's in another village a few miles away with no bus service so when I can no longer drive it's a problem. The local authority will fund respite but then it's up to me to arrange payment for the long term care.

The stress is getting me down and I am trying so hard to stick to the plan to ensure his future, and mine.

Hi !! Please dont rule out the cheaper one just because its in another village
If and when you cannot drive there to visit
Could a relative or friend or neighbour
Take you
I had to get bus to/from my mums nursing home over1/2hour away
I did have many offers to take me
People are so very kind and helpful
Hope this helps a wee bit
Good Luck with everything xx

 

[Old Flopsy]

Gosh this is so difficult. I feel as if they have given him a phone to enable him to keep ringing me to put emotional pressure on me- he hasn't been able to use a phone at home for months-or is that just my imagination. I am up at this unearthly hour with nobody to help me.

My son has mental health problems at the moment and cannot offer any support as he is so wrapped up in his own issues and trying desperately to remain at work (a job he hates) to pay his mortgage- he lives alone, which is an additional worry for me as I hate knowing I am adding to his fragile state. My other nearest relative is 30 miles away but she is supporting her dad who is looking after my sister with Alzheimer's. Oh it's all so much for me.

If I get him in the care home I have chosen he will be nearby, and I could walk there if I could no longer afford a car. But it also means that he could walk home- if by some miracle he regained his mobility- then what happens.

If he goes to the cheap one, run by the local authority, which is a few miles away, it would avoid top up fees, so taxis could be afforded. Perhaps I just insist on the dearer one near my home even if it's just for the respite period.

The worst aspect is the homes tell me he must stay in his room for two weeks isolation cos of covid and they keep asking me if he will- how do I know?

The hospital sent his soiled clothes home to wash and they are covered in excrement- this is what I avoided somewhat by using Tena Men pull-ups, but the hospital just used a pad which hasn't worked.

Oh I don't know what to do. Who tells him he is going into respite? If I tell him on the phone he will be devastated. I feel as if he is just sat in the hospital waiting for me to arrive and take him home. I am weakening but I know I won't be able to keep him safe. I am heartbroken.

 

[Grannie G]

Hello @Old Flopsy

Would it be possible to tell your husband the doctor wants him to go to a convalescent home to help improve his mobility? This is what I told my husband and he accepted it.

But it also means that he could walk home- if by some miracle he regained his mobility- then what happens.

Do you think this is really possible?. Does this home have a combination lock entrance and exit? I doubt your husband would manage this.

The two week`s isolation is a big problem. I`m sorry I do not know how anyone can be expected to settle in these circumstances but you can only try.

I know it sounds cruel and possibly is but I would make sure there is no access to a phone.

These are the hardest decisions for you and all you can do really is weigh up the pros and cons based on what you have. Please bear in mind this illness will not go away and today, your husband is the best he will ever.

 

[Old Flopsy]

Oh @Grannie G thankyou so so much for your reply.

I feel so utterly alone trying to make decisions.

Yesterday I told the social worker I want him to go to the local home but she is ringing back today to see if I have reconsidered. The home is £885pw so the Top Up is £240pw so £12480pa to pay or defer payment against our home, but if he settles here I could easily visit.

He has worked all his life and helped so many people along the way, so I want him to have the best I can afford. It's a home with nursing care available should he later require it.

I thought the Government were bringing is legislation to limit the amount someone paid for care to £70,000 but the social worker said this legislation never went through.

I am finding it so stressful and I am dreading him bombarding me with phone calls again. this is so painful.

 

[Sarasa]

This is such a difficult decision @oldflopsy. Regardless of costs and location do you know much about either place that has been suggested and which might best suit your husbands needs? As for the staying in his room, that is a tricky one. I know if mum had moved into care during the covid crisis rather than before there is no way she would have stayed in her room, but mum is (or was ) very physically fit for her age. If your husband has mobility problems he might find it tricky to walk too far. As for phoning you up can you ask the hospital (and later the home) not to allow your husband access to a phone during the night so you can get some sleep.
I was going to ask if you had any family you could discuss these options with, but I can see that would be tricky at the moment. How about phoning the Dementia Connect support line on 0333 150 3456 and talking through your options with them.
Thinking of you {{{hugs}}}

 

[jennifer1967]

hello @Old Flopsy , just wanted to sympathise so not greatly helpful but would the cheaper one be better in the long run if your husband becomes permanent as it would take the pressure off you about paying the top up fee. it might be just as good as the more expensive one and could leave you the money for a taxi. im thinking if your husband goes to the home just around the corner, would be too accessible for him or be forever on your mind. it might not have better care and you are paying for window dressings, frills etc. have you phoned them both and get a feel of how they sound. im thinking aloud. its a hard decision that i would struggle with as well.

 

[canary]

Hi @Old Flopsy
Thats quite a dilemma and I can see why you want him to be in the local care home, but I would be very, very wary of paying top ups, especially at that level. Top-ups do not stay the same and will go up with time and as he needs more care - much higher than inflation and sometimes astronomically. I can understand that you want the best for him, but you would probably be paying for things that he will never use, or decor that doesnt improve his care.

Mum was in a very basic care home, the decor was a bit shabby and old-fashioned, but it was clean and the care was wonderful. Mum was happy there.

As @jennifer1967 has said, going for somewhere cheaper would give you money for taxis, or once things get back to normal you might be able to get a lift.

 

[Weasell]

What a terrible time.

If you choose the home with no tops ups for respite, would that then give you the chance to find out if it is any good?

Just because he has respite doesn’t mean he has to stay there for ever?

If you are not happy then when the six weeks are up move him to the dearer home?

It would be more stress and upheaval, but you are used to stress!

Did he have district nurses calling in for any reason? If he did and you built up a relationship with them, then call up ‘Barbara’ or whoever and have a chat with them and try and get some local knowledge on the homes. The nurses will most likely visit both regularly.

Have you a friend with an Uber account that can find out exactly how much the journey would cost ?
Or It maybe someone from your area visits and you could share petrol costs?

 

[Old Flopsy]

Thankyou for your posts. He has never had district nurses so I can't get information that way. I don't know anybody with an Uber account or if anybody else visits the place. Bit of a problem.

But I have just rung the hospital and told the nurse that his calls are upsetting me and him - I had one at 8am today-as he just wants me to fetch him. She said she will move the phone, but he is asleep at the moment.

She kindly offered to ring the cheaper home to find out if they have room, are suitable for his level of dementia, and whether he would have to isolate for two weeks. She will ring me back. At least he has just got a letter saying the covid test done on Monday is negative, and he had both jabs weeks ago.

I just need help to make the best decision.

 

[jennifer1967]

Thankyou for your posts. He has never had district nurses so I can't get information that way. I don't know anybody with an Uber account or if anybody else visits the place. Bit of a problem.

But I have just rung the hospital and told the nurse that his calls are upsetting me and him - I had one at 8am today-as he just wants me to fetch him. She said she will move the phone, but he is asleep at the moment.

She kindly offered to ring the cheaper home to find out if they have room, are suitable for his level of dementia, and whether he would have to isolate for two weeks. She will ring me back. At least he has just got a letter saying the covid test done on Monday is negative, and he had both jabs weeks ago.

I just need help to make the best decision.

thats better. she will be able to ask the right questions and knows his level and takes some off of you. could you phone a local taxi firm and ask them? it cant be as much as the top up.

 

[Banjomansmate]

One thought, if your husband goes into the home close to you I think you might then feel the need to visit on a daily basis and as people with previous experience have found, that can be quite a lot of pressure on you and not help him to settle in and gain a rapport with the staff.
The top up is a big chunk of money and apart from the distance to travel for you, what more would he gain from it?

 

[Old Flopsy]

I have taken note of all your suggestions and decided that I must consider the local authority care home in the village a few miles away- only to find that it is full.

So now the hospital social worker is trying to find a local authority care home further afield, if only just for the respite period.

Thankfully I have had no further calls from OH asking me to come and pick him up- but I still worry about him feeling that I have abandoned him. It's awful.

I sit here missing him desperately - but I'm missing the kind, supportive husband he was before dementia, and a few days apart has made me forget the intense stress of trying to keep him safe as he fell again and again. Is this a normal way to feel in these circumstances?

 

[NotSuperMan]

Hello old flopsy I sure feel your pain thro your posts. Try to just take one day at a time. Can you do something nice for yourself? Ring an old friend? Do a bit of knitting? Catch up on your fave TV programmes? Hopefully your hubby will be in a settled respite care home and you can visit (he will be well cared for)
Let us know your fave hobby/interest ?
Be real gentle on yourself

 

[Sarasa]

That's a pain about the care home being full @Old Flopsy. I hope the social worker fins a local authority home for the respite period pronto. Even if it's further away it might be easier to get to by public transport. That will give you time to really consider the pros and cons of the place near you.

 

[Old Flopsy]

Hi @NotSuperMan

I've tried ringing a friend but it's like 20 questions about what is happening to OH lol- so I end up more tearful!

I normally do crochet but I am just not in the mood since OH went to hospital- don't know why!

But I've been catching up with Classic Coronation Street on every afternoon- from 1997- Deidre is heading for prison- I remember watching it first time round when Tony Blair joined the FREE DEIDRE RASHID call ha ha.

Just waiting to hear where hubby will be taken and will look forward to seeing him one day .