Holibobs

[jknight]

Hi all,

Do you manage to have a regular holiday? If so, how?
We haven't had a holiday for four years. We (husband & me) have managed the odd night away but nothing more. Mum gets anxious if we aren't around every day and we are both only children.
We are both exhausted and in need of a break (respite care not an option. Mum isn't bad enough and it would distress her, immesureably.)
We thought about taking her with us but are afraid she would be very disorientated. Also, selfishly, it wouldn't be a break for us.
Any ideas?

 

[HillyBilly]

Why is respite care not an option?
It's for you, as carers, not the "caree".

 

[LilyJ]

It's difficult to see how you can get a break without respite care.
A few suggestions:-
There are agencies who provide in-house care; they're not cheap but at least your PWD would be in her own environment. Don't think that I can name any here......
Is there a trusted friend or relative who would come and stay with her whilst you go away?
I don't understand your point that she's not bad enough for respite, there's no standard of level of disability beyond needing to be looked after, at least as far as I am aware.
I do hope that you can find a solution.

 

[father ted]

This could be my post jknight. My Mum has AD and came to live with us 7 years ago. Me and husband have not been away in all that time apart from odd nights away together which means we stay in this country.

I also have a disabled daughter living at home so can only go when she is at respite and then get a sitter for my Mum. We have come to accept this and now if we feel in need of a break when respite for daughter or sitter is not available me and hubby take weekend breaks separately so one of us is at home to man the fort.
Not what we would choose to do but all we can do currently.
Later this year I hope to take my daughter away and then will definitely get a live in carer for Mum.
My Mum is still capable of getting herself washed and dressed unaided, enjoys TV and going to her day centre. She doesn't like me going away as I am all she has ( I am an only child too), and she doesn't want to go anywhere, but I owe it to myself and my daughter to have a life beyond these walls.

 

[jknight]

This could be my post jknight. My Mum has AD and came to live with us 7 years ago. Me and husband have not been away in all that time apart from odd nights away together which means we stay in this country.

I also have a disabled daughter living at home so can only go when she is at respite and then get a sitter for my Mum. We have come to accept this and now if we feel in need of a break when respite for daughter or sitter is not available me and hubby take weekend breaks separately so one of us is at home to man the fort.
Not what we would choose to do but all we can do currently.
Later this year I hope to take my daughter away and then will definitely get a live in carer for Mum.
My Mum is still capable of getting herself washed and dressed unaided, enjoys TV and going to her day centre. She doesn't like me going away as I am all she has ( I am an only child too), and she doesn't want to go anywhere, but I owe it to myself and my daughter to have a life beyond these walls.

My mum won't entertain the idea of a day centre so all we can do is the odd night away. Thank you for your response x

 

[Rosettastone57]

Hi all,

Do you manage to have a regular holiday? If so, how?
We haven't had a holiday for four years. We (husband & me) have managed the odd night away but nothing more. Mum gets anxious if we aren't around every day and we are both only children.
We are both exhausted and in need of a break (respite care not an option. Mum isn't bad enough and it would distress her, immesureably.)
We thought about taking her with us but are afraid she would be very disorientated. Also, selfishly, it wouldn't be a break for us.
Any ideas?

My MIL lives on her own and husband and I discussed the difficulty of having a holiday. We have no family members to help but with carers in place we felt that we could go away for a couple of weeks. In fact we went to USA. MIL can cope with some things but she struggled with meals. So I enlisted the help of a neighbour to get food in every week. Frozen meals got delivered every week. The care agency are very good and increased the visits every day . She is self funding. They have an app which I signed up to on my smartphone which allows me to view what happens on every visit so we can keep tabs on things. I can also use this to send messages and remind MIL about appointments via the carers. She refused a day centre and respite. A distant niece acted as emergency call if things went wrong. I also used our local befriending service to visit regularly.
MIL does get anxious but we felt that this was our only option to deal with this otherwise we would never get a break. I used the app Touchnote to send out postcards every few days with our photos on uploaded so MIL knew where we were and that we were ok. Not the cheapest option but kept her happy.

Not everyone is going to agree with us going away and abroad as well but we felt this was viable albeit takes some planning. So far we have used this method successfully twice. Obviously as things deteriorate this will be a rethink.

 

[Sam Luvit]

10 months after I moved in with mum, I went on holiday with a friend. I went abroad for 2 weeks

The planning I made sure there was someone going in every day, grandson, son, cleaner etc. I batch cooked & filled the freezer. I bought ready meals. I arranged for visitors to bring bread & milk etc. You have to think of everything you normally do & then put it in place. Lists. Lots of lists

I went to Liverpool this year for a "TP Retreat". Again, lots of planning. It was 5 days. The only person who let me down was her friend!! I threatened everyone else

I would guess mum is now moving into, or in, stage 4. I want to go away again. I need a break. We all need a break to keep going

There is no way I will get mum to agree to respite, but I have managed to get her to agree to a befriender , yet to start, but we are on the waiting list. I've also got the details of a lunch club. 9-5, they pick up & drop off. Mum is looking at it and fingers crossed will go

I got a cleaner in. Yes I could do it, but it's a help in the middle of everything else I do. I told mum it wasn't for her, it was for me. She pays

Get a cleaner twice a week, he/she will go in while you are away. That's 2 days a week covered.

Get on the list for a befriender, They tend to be free, so well worth looking at, once a week you get an hour to go grab a coffee, sit in a park, go for a walk. If you go away, some will visit more often, so that's another day a week, maybe more. While you are away, you could maybe pay for extra visits

Ask about a grant from SS to cover extra costs of carers while you have a break, even given to self funders (yes, I was surprised too)

I phoned mum every day. Yes it was expensive, but the peace of mind was worth the cost. I knew she was still safe

I listed out everything I do, then found ways of covering it with other people, it's only 14 days.

Mum can get very anxious when I'm out, I volunteer 10 hours a week. It's not a lot, but it seems it to her. So going away for 14 days was a lot, but that was a year ago. Going away for 5 days 3 months ago was stressful, but I did it & she survived.

If you've not been away, start with a weekend or midweek break, it'll let you know it can be done. I visit my youngest ever 6-8!weeks & sleep on his sofa. It's a break & only 36 hours for mum. Try to set something up so even a night away us a break & she gets used to you being gone for a short while

I know it's hard. I nearly cancelled Liverpool, but made myself go.

 

[jknight]

Thanks everyone! Mum has carers 4 days a week, to prompt meds, make her tea and put her plate & cultlery out for her lunch (meals on wheels)
Mum doesn't remember the carers coming in, by teatime.
Mum's needs are taken care of, if I'm not around, but mum just knows that I'm not there and it upsets her. Neither my husband nor I, have siblings. We have 2 daughters but one lives an hour away and the other is a very new mother (baby is 5 weeks old, today)
We are going away for 2 nights and, for us, it feels like a fortnight away!
I know respite is for the carers but I couldn't do it to mum as she has no idea about her condition. She just thinks her memory is a bit iffy!

 

[Emac]

Hi There...just a question. What about you and what you need? You need to stay well to be able to look after your Mum. No-one can go on caring indefinitely without breaks. This disease and your caring duties can go on for 10 years or more...you may think you are coping for now but how long can you last without regular breaks really? Your mum may be upset but that's all it is just upset- not the end of the world and she wont be upset all the time you are gone - a bit like children when they go to school or nursery for the first time..they really don't cry all day!

My Mum never acknowledged her illness either- only memory problems, but when Dad had respite we told her he had some hospital appointments to attend and the doctor had said he needed a break. We told mum we had booked her into a nice hotel/home so she would be looked after while he was not able to look after her. She didn't love it but she didn't totally hate it either- it was what was needed to enable the caring to continue so we did it. Don't let emotions get in the way of a good sensible decision! I am glad you are getting away for a couple of nights and congratulations on the new grandchild- that must be a joyful distraction! Good luck whatever you decide to do.

 

[Rosettastone57]

Hi There...just a question. What about you and what you need? You need to stay well to be able to look after your Mum. No-one can go on caring indefinitely without breaks. This disease and your caring duties can go on for 10 years or more...you may think you are coping for now but how long can you last without regular breaks really? Your mum may be upset but that's all it is just upset- not the end of the world and she wont be upset all the time you are gone - a bit like children when they go to school or nursery for the first time..they really don't cry all day!

My Mum never acknowledged her illness either- only memory problems, but when Dad had respite we told her he had some hospital appointments to attend and the doctor had said he needed a break. We told mum we had booked her into a nice hotel/home so she would be looked after while he was not able to look after her. She didn't love it but she didn't totally hate it either- it was what was needed to enable the caring to continue so we did it. Don't let emotions get in the way of a good sensible decision! I am glad you are getting away for a couple of nights and congratulations on the new grandchild- that must be a joyful distraction! Good luck whatever you decide to do.

I agree with Emac. It is hard trying not to upset anyone but you have to strike a balance between your needs and that of your mum. My MIL has no idea either of her condition which in a way makes it easier just to arrange a break and tell her it's happening. We never justified ourselves to her why we went away, we told her what to expect from the carers and the others who helped us out. Eventually after a short tantrum she just accepted it . We had to stand our ground otherwise my husband who works fulltime would never have had a holiday for the next few years. As Emac said this situation can last years. Sometimes you have to be a bit selfish and put your needs first. MIL was used to us going to the USA anyway as we had been travelling there for many years prior to the illness so it didn't come entirely out of the blue. Don't let this illness control you.

 

[jknight]

The holiday should be UK based, as you may struggle to get affordable travel insurance for overseas travel. The hassle of airports or over long car or ferry journeys is really a non starter.
The only thing I can think of, is employing a carer for the holiday, booking a hotel with a separate room for you and adjoining rooms for your mum and a carer.
This could mean that you are there for breakfast and dinner, but can escape say 10-6 daily.
My MIL in the early to mid stages spent a couple of weeks with us this year. She had to be directed and looked after by FIL, to the loo etc, but it went reasonably well. They even managed a river cruise in Europe. I think the key on their holiday afloat was an en suite bathroom. Mind you we were exhausted!
Also routine was important as was in MILS case, closeness to a loo, a minimum of noise and not interacting with too many folks.
Another idea may be to rent a 3 bedroom place in the UK with a couple ensuites and maybe a garden with a view where you can leave PWD with carer for the day?

Sorry, that's all I can come up with. I hope you manage to find a solution!

Thank you!

 

[jknight]

Why is respite care not an option?
It's for you, as carers, not the "caree".

I know but mum is living independently, with my (and my husband's support.) There is no one else. Mum doesn't understand her diagnosis. Hilly Billy, I understand what you are saying and I suspect I would be saying the same thing to someone like me. I just can't do it to her, though. Introducing befriending carers was difficult enough! (although she has accepted them (apparently they are my friends))

 

[jknight]

Hi There...just a question. What about you and what you need? You need to stay well to be able to look after your Mum. No-one can go on caring indefinitely without breaks. This disease and your caring duties can go on for 10 years or more...you may think you are coping for now but how long can you last without regular breaks really? Your mum may be upset but that's all it is just upset- not the end of the world and she wont be upset all the time you are gone - a bit like children when they go to school or nursery for the first time..they really don't cry all day!

My Mum never acknowledged her illness either- only memory problems, but when Dad had respite we told her he had some hospital appointments to attend and the doctor had said he needed a break. We told mum we had booked her into a nice hotel/home so she would be looked after while he was not able to look after her. She didn't love it but she didn't totally hate it either- it was what was needed to enable the caring to continue so we did it. Don't let emotions get in the way of a good sensible decision! I am glad you are getting away for a couple of nights and congratulations on the new grandchild- that must be a joyful distraction! Good luck whatever you decide to do.

Thank you! Our, little break was fabulous! Our new granddaughter is delightful and has lightened our lives! I do recognise that we are both running on empty) Mum isn't bad enough to go to a care home. (And there is NO way she would believe it was a hotel!) I think I need to chat to the care company I employ and see if they can help with extra visits. I really need a break. Dad was diagnosed with cancer of the oesophagus in 2012. Died 2014. Mum presented with symptoms about six months later. It's been intense.....