I want to go away on my own but how?

[Littlebear]

My OH & I have always travelled extensively but the last two trips away have been disastrous & I can't go through that again. In June we've been invited to my closest friend's big anniversary but she lives overseas & I want to go on my own but I'm not sure how & where I can leave my OH.

He has FTD & whilst he can hardly speak he is very aware of his surroundings & what is going on. He is very anxious and will barely let me out of his sight - he follows me everywhere & he frequently gets angry & violent although that has improved a bit since going on anti anxiety medication. I'm worried that if I do leave him he will be much worse & that I'll suffer for it on my return but I do desperately need a break. I have no help with his care. I've been doing this for 5 years now & I know my health is suffering.

Does anyone have any advice or experience that might help me get a break away?

 

[Beate]

The solution is respite in a care home. If he is self-funding you can arrange it yourself, if he isn't you will need a needs and Carers assessment from Adult Social Services first. There will still be a cost but via SS it's only about £130 a week.

Quite frankly, if you have no help, you are desperately overdue those assessments anyway. You are entitled to them by law so contact Social Services urgently. The only problem is that you have left it a little late for them to react in time for June, so you will have to stress that this is an emergency and that you are very close to carers breakdown if you don't get some time away fast. If you can't get it sorted out in time, plan a trip to your friend for a little later in the year?

 

[karaokePete]

Hello @Littlebear, I'm concerned by your mention of violence and fear that things will be worse if you take a break.

The experts on the helpline are very good and I wonder if you may benefit from talking to them. Details are as follows

National Dementia Helpline
0300 222 11 22
Our helpline advisers are here for you.
Helpline opening hours:
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm

Live on-line advice is also available in the UK and you can see the details of that if you follow this link https://www.alzheimers.org.uk/get-support/national-dementia-helpline/live-online-advice

 

[Philbo]

Hi @Littlebear

Sounds like our dementia journey is very similar (my wife was diagnosed with FTD in Jan 2014) although thankfully, she has progressed through the mood swing phase (though she was never violent) and seems to be in her own happy little world pretty much all the time.

She attends a LA funded day centre (run by the local NHS mental health trust), which I had to arrange via the SW (she is currently self funding).

The centre also has a respite unit and I was able to get her booked in there last summer, so I could attend a friends 50th birthday celebration in Majorca. Because she goes to the day centre, they were able to assess her suitability for respite and all went very well.

I am going away in July with my kids and grand-kids, so we have respite for 2 weeks organised (still self funded but at least the charges are at the LA rates - 9 days last year cost around £610).

As Beate has said, it may be difficult to arrange something in the short timescale, as I would have thought that even if you arranged directly with a care home that can offer respite stays, they would need to assess your husband's needs and their ability to meet these?

I really hope you are able to get an urgent assessment and get something sorted out.

Best wishes
Phil

 

[Littlebear]

Thank you all for the advice. My main concern is the impact that respite care might have on my OH rather than the practicalities. He is still very aware of his surroundings and what is going on. He would understand that I was leaving him to go away (although he might forget) and I am worried that in leaving him behind I will make him worse. Without doubt I provide security and I suppose I'm concerned that I would permanently break the bond of trust that we have. That in turn might make him more anxious & subject to more violent moods. (He has never physically attacked me - it's the walls and furniture that suffer & I do worry that he might badly injure himself.)

I know that I need to get assessments done anyway as if I was ever seriously ill or had to go into hospital he would need a care plan in place. We have no children and other than a cousin who is caring for his wife with Parkinson's my OH has no close relatives so we really are on our own. Luckily we do have close friends but they have their own health problems too.

I really would be interested to hear other carers experiences of respite care and whether it has had a permanent effect on the PWD.

 

[canary]

My OH doesnt have a diagnosis, but has all the symptoms of FTD. He too is very aware of his surroundings and is very well orientated in the here and now.

Recently he has been on a weeks respite. I worked very hard to find somewhere suitable and was lucky that there is a place near us which has bookable rooms, is just perfect for him and has a very "hotel" feel about it. I worked hard (though seemingly casual) to suggest that it might be a nice place for a little break for him and when we went and looked at it the manager was wonderful in describing it as a "hotel with added nurses". He agreed to go and enjoyed it so much that we will use it again. I might go away at some point, but if I do I will not be telling him that I am going away. I want the focus of it being his little treat to stay on him.

 

[Beate]

Think about this: What will happen if you don't get respite and consequently you get ill or suffer carers breakdown? You will not be able to look after him at all then, and he will have to go into a care home anyway. This way at least you have some control over it and get him used to it. Worrying about what ifs are never helpful. You cannot run yourself into the ground out of fear. Your health matters too.

 

[Amelie5a]

"I really would be interested to hear other carers experiences of respite care and whether it has had a permanent effect on the PWD"

I'm caring for my Dad, 92, pretty much full time now. He was diagnosed 5 years ago with mixed dementia.To be honest, life with him is not that bad - we have some good times still. But I find it draining. I'm not in my own home which is 150 miles away and this isn't the retirement I'd planned. I so need breaks!

So far Dad's been for respite care 4 times over the last two years. I always find the build-up to it really stressful - getting everything ready and worrying how it'll go. Like you I worry about the effect on him - particularly when he's still content in his own home.

Each time he's been different when he's come out.

1st visit. For several days after he kept asking if those people knew where he was and if he had to go back. Then he settled back home and nothing more was said.

2nd visit. He came back and just settled in as if he'd never been away.

3rd visit. He didn't seem to be too well when he came back - very sleepy, and probably took a good week of sleeping late/going to bed early before he achieved more of a 'norm'

4th visit. The only time there's been an issue during respite care. I got a call to say he'd been trying to get home. His care manager was brilliant and bought in extra care during the day. (She was determined I got the full two-week break) When Dad came back, he kept saying 'there's no place like home' - had a lot of energy. And then after 4 days, just bombed. It was almost a week of mega sleeping and now he's back to his 'norm'. But at no point did he blame me - but his dementia is such that he's not likely to make that kind of connection.

After this last experience, I'm very wary of him going to respite care again. I don't know why there were issues but I suspect he just had too much time on his own. He will happily sit for hours watching popular classical music that I've recorded over the years but without that kind of distraction, he can get restless.

So - what to do? My next break should be OK. My sister is going to spend over a week here, and then a private carer will come and stay with Dad for a few more days until I get back. The carer has stayed here with Dad once before and he was OK with it, so I'm hoping that will be the case again. I think he copes best now with one-on-one and provided there's someone/anyone? around in the house he relaxes. I often feel I'm interchangeable with the cares who come and go every day.

Sorry, I'm rambling a bit. The key thing though, is that you need a break. You will never know how he responds to respite care unless you go for it. What choice do you have as to where he may go? Can you find somewhere that feels best for his FTD? I didn't have any choice but the local reputation is good, so I kept telling myself they knew what they were doing.

Just one word of caution. Having a break is essential for your own well-being - but each time I've found it difficult slotting back in to caring mode. I get there - but it's like my body/psyche resists.

 

[Philbo]

Hi again @Littlebear

Having cared for my wife for 4+ years when she had her first respite stay last summer, I too was worried about how she would find it. To some extent, if was less traumatic for us, as she is less aware of her surroundings and does not seem to notice, for instance, if I leave her to be looked after by others. It certainly helped that the day centre staff also rotate in and out of the respite unit.

My biggest concern though, was how she would react to coming back home. With her mobility getting worse, I worried if she would cope with me helping her up and down stairs again (the unit is all on one level), would she be unsettled back home - how would I cope having had 9 days off!

I am pleased to say that the staff said she was happy as ever, during her stay and we settled back into "normal" home life on her return. I admit that I found it hard to get back on the "dementia carer hamster-wheel" again but I managed (red wine is wonderful)

I just pray it will be the same this July.
Phil

 

[somewhat despairing]

Think about this: What will happen if you don't get respite and consequently you get ill or suffer carers breakdown? You will not be able to look after him at all then, and he will have to go into a care home anyway. This way at least you have some control over it and get him used to it. Worrying about what ifs are never helpful. You cannot run yourself into the ground out of fear. Your health matters too.

Hi again @Littlebear

Having cared for my wife for 4+ years when she had her first respite stay last summer, I too was worried about how she would find it. To some extent, if was less traumatic for us, as she is less aware of her surroundings and does not seem to notice, for instance, if I leave her to be looked after by others. It certainly helped that the day centre staff also rotate in and out of the respite unit.

My biggest concern though, was how she would react to coming back home. With her mobility getting worse, I worried if she would cope with me helping her up and down stairs again (the unit is all on one level), would she be unsettled back home - how would I cope having had 9 days off!

I am pleased to say that the staff said she was happy as ever, during her stay and we settled back into "normal" home life on her return. I admit that I found it hard to get back on the "dementia carer hamster-wheel" again but I managed (red wine is wonderful)

I just pray it will be the same this July.
Phil