I'm worried about taking a respite holiday ......

Annypurple

Registered User
May 6, 2015
44
0
This is complicated. I've been grounded and caring for my OH for over five years first as he recovered from cancer and then dementia took hold. I've been without a break on my own all that time. For the past year and a half I've not even been able to leave OH for any length of time and have carers in to help him and be with him daily, this is the only way I've been able to get out.

I'm exhausted and in need of a respite month off. I'm going to view a residential home next week.

I'm worried that he will get worse for being away from home; that he will decline. He may not know where he is any of the time while there and become utterly confused. He may not know where he is or who I am after the month when I collect him and bring him back home.

Does anyone have experience or advice? Thanks :)
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
You've been caring a long time. And although your concerns about the month in Respite are certainly valid, and it's certainly true that your husband could deteriorate during your absence, and the strange environment might affect him, isn't it also true that he might deteriorate anyway?
Really, it could turn out that he will be so settled by the time the month is up, that you might find yourself feeling guilty for unsettling him again by taking him home.
 

Selinacroft

Registered User
Oct 10, 2015
936
0
Hi Anny
I'm also arranging for Dad to go into residential respite for thefirst time ever as I also need a break. I am making endless lists, have you been to visit any yet. I visited 3 and have plumped for the one that I placed in the middle, although I visited a year or two back and the one I have chosen is now getting better CQC ratings than the top one I visited.
A lady is coming out to assess Dad soon and once I have dropped him off and I going to switch my off button on!
Enjoy your break and don't spend it worrying about your caree.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
All of what you say may well be true. What happens if you break down and he has no care from you at all? Practical, pragmatic decisions have to be taken to protect you both. I am about to take a two week break from caring for the first time since last June. Without this I would become worn down and depressed. Look after yourself so that you can look after your husband.

Very good wishes.
 

Annypurple

Registered User
May 6, 2015
44
0
You've been caring a long time. And although your concerns about the month in Respite are certainly valid, and it's certainly true that your husband could deteriorate during your absence, and the strange environment might affect him, isn't it also true that he might deteriorate anyway?
Really, it could turn out that he will be so settled by the time the month is up, that you might find yourself feeling guilty for unsettling him again by taking him home.

Thanks Lady A. This is encouraging, sort of - I feel so guilty if he were to deteriorate, and yes he will do (is doing) but I don't want to be responsible for speeding up the process. Of course if I were not here, he would have declined much much faster already. Got to weigh it all up. I visit the home on Monday - I shall ask them what their experience is.
 

Annypurple

Registered User
May 6, 2015
44
0
Hi Anny
I'm also arranging for Dad to go into residential respite for thefirst time ever as I also need a break. I am making endless lists, have you been to visit any yet. I visited 3 and have plumped for the one that I placed in the middle, although I visited a year or two back and the one I have chosen is now getting better CQC ratings than the top one I visited.
A lady is coming out to assess Dad soon and once I have dropped him off and I going to switch my off button on!
Enjoy your break and don't spend it worrying about your caree.

Thanks for your reply Selina - how long are you having a respite for? The home I am visiting on Monday say their minimum time is four weeks. This is fair enough and long enough. I agree. I'm really hoping to feel prepared enough so that the 'switch off' button can be pressed. I want to go somewhere where no one knows what I live with, I want a space where I can find and be responded to as a 'normal' person would. Not having the first thing being said "How's M....?" What are your lists for??? I wonder if they will visit us, I had imagined I will have to take OH there .... have to explain as best I can and not just desert him on the doorstep! Feels important. Feels scary. Thanks for thinking of me.
 

Annypurple

Registered User
May 6, 2015
44
0
All of what you say may well be true. What happens if you break down and he has no care from you at all? Practical, pragmatic decisions have to be taken to protect you both. I am about to take a two week break from caring for the first time since last June. Without this I would become worn down and depressed. Look after yourself so that you can look after your husband.

Very good wishes.

Thanks for your reply Marion, it's helpful to know other people see the need for this - you say the same as our son in that I'd be no good if I wore out - it's better for both of us in the longer (or shorter) term for me to have a break. Thanks for your thoughts.
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Hi Anny

Good advice from others but it's hard to take that step, isn't it?

My wife was diagnosed in Jan 2014, though I reckon she's shown signs of getting dementia for 2 or 3 years prior to this.

I am her sole carer and the only respite I get is a 3 hour "dementia friend" visitor once a week, provided by a local charitable organisation (in the last 4 weeks).

I could afford to bring in more help but up until now, I have not felt the need, given that most of the time, she is a happy soul and we are still able to go down the pub at weekends. Our circle of friends there are all very supportive and it does us both good.

The main difficulties are dealing with her increasing incontinence and the frustration of having to ask her umpteen times to do something (plus endless recovering of items that she's "tidied" up).

I too, am getting to the point where I could do with a break but I also fear that if I arrange this, it will adversely affect her and in effect, make things worse?

I know the time will have to come but at the moment, I can't bring myself to do it.

Phil
 

Marcelle123

Registered User
Nov 9, 2015
4,865
0
Yorkshire
I take my hat off to you, Anny, and to all the others who've posted on this thread.

I have never been a carer for someone in my own home. I only had to cope with a hospital crisis with my Mum and then finding her a placement in a dementia home, selling her house, and dealing with all her things, plus some horrible aggro with a sister along the way.

Even so, I felt bad about taking a few days away. But it was wonderful to get away - such a mental restorative.

I really think you need to do this. Don't feel guilty. Take heart.

It is in your OH's interests as well as your own. You need to recharge your batteries. Dementia is so unpredictable that I don't think it's possible for you to take responsibility for the way it goes. You need this break, and maybe it will do your OH good too - honestly, nobody knows.
 

suze

Registered User
Oct 12, 2006
62
0
Sussex
do it but be ready...

Hi
I have just put my husband into a care home for 7 nights respite because I was on my knees, with no help at all and the dementia galloped away over the past fortnight to an incredibly frightening level.
Everyone says I should not feel guilty, but I do. I also felt bereft when I came home and cried for hours. This morning I hear that my usually fairly mild husband has tried to punch care staff...
I have been told not to visit until he settles - if he settles.....
Either way it is very hard, so I would say 'do it' but be prepared.



QUOTE=marionq;1416389]All of what you say may well be true. What happens if you break down and he has no care from you at all? Practical, pragmatic decisions have to be taken to protect you both. I am about to take a two week break from caring for the first time since last June. Without this I would become worn down and depressed. Look after yourself so that you can look after your husband.

Very good wishes.[/QUOTE]
 

sunshine82

Registered User
May 3, 2017
2
0
We have just had my gran in respite for two weeks. She settled in and although we had good days and bad, I would do it again in a heartbeat.
We went to visit her every day but for us it was the fact that we could sleep in our own beds at night that was the help.
Her care home had a dementia unit which gave her space to move if needed.
She has probably gone downhill slightly but that could have happened in the house any way.

It is a hard decision but you need time for yourself to continue to be able to care for your loved one.




Sent from my iPhone using Talking Point
 

Annypurple

Registered User
May 6, 2015
44
0
Hi Anny

Good advice from others but it's hard to take that step, isn't it?

My wife was diagnosed in Jan 2014, though I reckon she's shown signs of getting dementia for 2 or 3 years prior to this.

I am her sole carer and the only respite I get is a 3 hour "dementia friend" visitor once a week, provided by a local charitable organisation (in the last 4 weeks).

I could afford to bring in more help but up until now, I have not felt the need, given that most of the time, she is a happy soul and we are still able to go down the pub at weekends. Our circle of friends there are all very supportive and it does us both good.

The main difficulties are dealing with her increasing incontinence and the frustration of having to ask her umpteen times to do something (plus endless recovering of items that she's "tidied" up).

I too, am getting to the point where I could do with a break but I also fear that if I arrange this, it will adversely affect her and in effect, make things worse?

I know the time will have to come but at the moment, I can't bring myself to do it.

Phil

Hello Phil,
Thanks for your reply. I totally understand. I feel like a traitor! My husband is happy, settled and drifts through the day - bladder incontinent and limiting my chance to do anything else, leaving me with all responsibilities for everything which of course he must, and I take on board happily but I am very tired. I've been increasing the number of paid carer hours I'm using. Like you I began with one volunteer hour, then it went to eight hours with paid carers via and agency, up to eleven and now I've got someone to come and get my husband up in the weekday mornings as I've often had very broken nights. This all helps. But I feel the need for an extended totally time out.
 

Annypurple

Registered User
May 6, 2015
44
0
We have just had my gran in respite for two weeks. She settled in and although we had good days and bad, I would do it again in a heartbeat.
We went to visit her every day but for us it was the fact that we could sleep in our own beds at night that was the help.
Her care home had a dementia unit which gave her space to move if needed.
She has probably gone downhill slightly but that could have happened in the house any way.

It is a hard decision but you need time for yourself to continue to be able to care for your loved one.




Sent from my iPhone using Talking Point

Thank you sunshine. That's very encouraging. I plan to press the 'off' button and not go visiting every day - partly because I couldn't bear it if he begged me to take him out but also his memory is very short and I'm not sure it would make any difference (until he saw me). I am hoping when I see the care home they will help advise me about this. Good to know your respite helped you.
 

Annypurple

Registered User
May 6, 2015
44
0
Hi
I have just put my husband into a care home for 7 nights respite because I was on my knees, with no help at all and the dementia galloped away over the past fortnight to an incredibly frightening level.
Everyone says I should not feel guilty, but I do. I also felt bereft when I came home and cried for hours. This morning I hear that my usually fairly mild husband has tried to punch care staff...
I have been told not to visit until he settles - if he settles.....
Either way it is very hard, so I would say 'do it' but be prepared.



QUOTE=marionq;1416389]All of what you say may well be true. What happens if you break down and he has no care from you at all? Practical, pragmatic decisions have to be taken to protect you both. I am about to take a two week break from caring for the first time since last June. Without this I would become worn down and depressed. Look after yourself so that you can look after your husband.

Very good wishes.
[/QUOTE]

Oh! How awful for you Suze!!! I can just imagine how hard this must be. I can imagine all that you say being true for me - the teas, missing him. It's all so confusing but at the same time I must do something to help myself get some real rest - some deep undisturbed sleep and time to be still. Living with someone with dementia is exhausting in ways only those of us who do can know. It's not just the work, the physical work, but the constant demands, and sometimes crazy times.

It's not good to hear your husband has become aggressive to care home staff - I think mine could, he does, but only when he's feeling under pressure to do something he's not able to, not ready to - maybe they are not facilitating him enough?
I really hope he does settle and you get some peace in your very short respite time.
Take care.
Thanks for your reply and your thoughts.
 

Annypurple

Registered User
May 6, 2015
44
0
I take my hat off to you, Anny, and to all the others who've posted on this thread.

I have never been a carer for someone in my own home. I only had to cope with a hospital crisis with my Mum and then finding her a placement in a dementia home, selling her house, and dealing with all her things, plus some horrible aggro with a sister along the way.

Even so, I felt bad about taking a few days away. But it was wonderful to get away - such a mental restorative.

I really think you need to do this. Don't feel guilty. Take heart.

It is in your OH's interests as well as your own. You need to recharge your batteries. Dementia is so unpredictable that I don't think it's possible for you to take responsibility for the way it goes. You need this break, and maybe it will do your OH good too - honestly, nobody knows.

Thank you Marcelle - these are very wise words and I take heart from your adivce. You are right, dementia is unpredictable, that's part of the exhaustion - not know what's next. I'm sure I will find somewhere suitable for a month. Take care yourself.
 

suze

Registered User
Oct 12, 2006
62
0
Sussex
thank you too Annypurple


Oh! How awful for you Suze!!! I can just imagine how hard this must be. I can imagine all that you say being true for me - the teas, missing him. It's all so confusing but at the same time I must do something to help myself get some real rest - some deep undisturbed sleep and time to be still. Living with someone with dementia is exhausting in ways only those of us who do can know. It's not just the work, the physical work, but the constant demands, and sometimes crazy times.

It's not good to hear your husband has become aggressive to care home staff - I think mine could, he does, but only when he's feeling under pressure to do something he's not able to, not ready to - maybe they are not facilitating him enough?
I really hope he does settle and you get some peace in your very short respite time.
Take care.
Thanks for your reply and your thoughts.[/QUOTE]

He is aggressive at night because I think he wonders who these people are coming into his room. Nights are always the worst and the reason I am - reluctantly - thinking I may have to have a permanent care home for him. It is very difficult to get him in and out of bed, as he is really rigid and sometimes does not seem to have the strength to stand up....plus his balance is so poor now that he falls easily. I am so torn...I want to have him back and try again but fear the same thing will happen again....heartbreaking
 

Selinacroft

Registered User
Oct 10, 2015
936
0
Hi Annypurple, I shall be away for 10 days and fortunately the care home charge per day so I don't have to pay for a full fortnight. I've arranged for a taxi to collect him, one recommended by the home who is used to frail and awkwards customers. My biggest fear is that he will have an awkward moment and refuse to get in the taxi delaying my getaway.
I will be telling the care home in the assessment that all concerns should go to my brother while I am away as I am off duty!.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Anny, here I am at the airport and saw John covertly before I set off. I took him to the care home yesterday but had to go back this morning with his eye drops. I was told he was no bother and while I was talking to th nurse I saw him walking along the corridor with his sticks reading the articles and photos on the wall about various campaigns.

It helps that this a CH for ex servicemen and women because he equates it with an army hospital he was in many years ago in Germany. I wouldn't be surprised if he starts speaking German to them. He may not remember what he had for breakfast but old knowledge is still in there.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
hi marionq
just popped in to wish you a wonderful break
it must help having seen for yourself that John is settled
relax and enjoy :)
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
Anny and all, the first leg of my respite is coming to an end. I had four days in Amsterdam and having managed not to get knocked down by one of the thousands of bikes plus motor bikes and trams which pursued me at every corner I am on my way home. The Van Gogh and Rijsmuseums were the highlights. I am stunned by the beauty of many of the works I saw. Food for the soul as my daughter says. The canal trip was a must to see the layout of the city.

Now for the next part of my plan.

Carers so need an occasional break. This is my first since last June.