I would appreciate any comments about what I am thinking of doing.

[Cliff]

It has become very hard work looking after Dee.

Some days are good, others are not, but it is the continual slog of almost 24/7 caring and my age, as I approach 80, that is taking its toll . I get respite from two carers on two separate days and Dee goes to a Day Centre for five hours once a week and soon I will have a carer during the early morning to help with the toilet requirements.

Discussion with the RMN’s at the clinic indicates that Dee will most probably need a Home eventually when her condition really gets worse. They think I need a respite and it seems sensible to find a Home now who would take Dee on a short stay of maybe three days.

This would be an introduction for her to a Home and a break for me. If Dee settles for that short time, then future stays could be longer to give me a real break.

I am very concerned that I may be wrong thinking like this and would really like to hear your feelings about it.

 

[Grannie G]

Dear Cliff.

I think your care for Dee has been wonderful. It`s obvious from your posts that you adore her but how you`ve managed to care 24/7 for so long is amazing.

It`s the most sensible idea to allow Dee to get used to residential care in short spurts. It seems, unless there`s an emergency, that`s what most people do.

I can only speak from theory though but it still seems the best idea to me. Others who have been in that position will no doubt be able to give you better advice.

With love xx

 

[BettyL]

Cliff

I think it's a fine idea. Your loving care of Dee is an inspiration to others, like me, who are relatively new to caring for a loved one with this awful disease.

The one thing that is said most often to me is "Be sure to look after yourself", and it is kindly meant but very difficult to do. Your suggestion seems just the right thing to do at just the right time.

I do wish you and your Dee the very best.

Betty

 

[arun]

Hi Cliff

Caring for my Mum when my Dad was your age was getting difficult for him and it started to take a toll on his health.
If he was not in good health himself how could he provide care for Mum.
It was safer for her to be cared by professional staff.

I think it is for the best for both of you.
I wish you all the best.

Take good care

Arun

 

[Margaret W]

Hi Cliff,

I think it is a grand idea. Respite will give you a much-needed break and will introduce Dee to the environment of a Home. If she is happy there for a few days, and you are happy too, it could give you an idea of what is available if she needs to go into care permanently.

Give it a try, you have worked so hard to keep her at home, you are a star. But it seems to me that you need a little help now, so accept what is available and see how it works out.

Much love

Margaret

 

[DeborahBlythe]

Dear Cliff, I'd like to endorse what everyone else has said here. I'd encourage you to go ahead for both your sakes. Then see how the world looks after your break. Everyone needs to take a breather, and you are great in the way you care for Dee.
Regards Deborah

 

[Taffy]

Hi Cliff,

I have had no experience with respite and only because I simply knew nothing about it but other carers from the support group I attend did exactly what your thinking of doing with Dee.

Two ladies were so pleased that they did as when the time came for placement for their husbands the transition they felt was made much easier.

Best Wishes, Love Taffy.

 

[SusanB]

Hello, Cliff

I've read your posts here and I think that people who look after their loved ones at home 24/7 are truly amazing and admirable. Your love for Dee shines through and I think that you would be doing the right thing seriously to consider what has been proposed to you.

Just thought I'd offer my two penneth worth - I don't have experience of looking after anyone, but remember yourself too!

Susan

 

[Brucie]

Hi Cliff

it is a difficult one, isn't it?

in my experience the first hurdle to overcome was getting myself used to the idea of respite.

There was never any respite available for Jan and me but that is probably just as well since I never did get used to the idea.

However, I did look at some places and I found that helpful in later times when care homes became the issue.

So, for the moment, if you can find the time [I know how hard that can be] explore the options available.

If you are well armed and content as you can be that there is something suitable, then that may carry across to Dee.

best wishes

 

[BeckyJan]

Cliff:

I understand totally how you feel because like you I am doing the 24/7.

If Dee were her normal self without this disease, then I believe she would also be advising you to take respite. I think you should go ahead and I do hope you find a suitable place just for a few days - then you are another step forward to maybe a more permanent arrangement.

In no way will you be letting Dee down - you will ensure she is cared for properly and give her quality time when you visit - we have seen this demonstrated by folk like Connie, Brucie and Hazel.

Good luck Cliff. Best wishes Jan

 

[Skye]

Dear Cliff

I can only endorse what everyone else has been saying. You are exactly where I was last August, and I know how hard it is to relinquish the care of someone you love. But we're only human, and we all have limits to our physical and mental stamina.

I had very reluctantly agreed to respite last August, when the matter was taken out of my hands by John's UTI.

I hope you will take particular note of Bruce's post. Because I had been round all the homes in the area prior to booking respite, I knew which one I would want John to go to permanently if that became necessary. Very lucky that I had, otherwise I would have been panicked into agreeing to anything.

You've done a wonderful job looking after Dee for so long, but the strain has been apparent over the last few weeks. Take a break, think seriously about the future (yours as well as Dee's), and if that comes down to full-time care, try not to see it as defeat. Your love and caring for Dee will not stop, if anything it will increase as you and she will be able to enjoy your time together.

Love and hugs,

 

[connie]

Dear Cliff

Lionel and I were so very much younger than you and Dee when we started on this journey. I could never have cared for Lionel at home as long as I did without respite.

As we introduced respite into our lives quite early on it never became a hurdle. I know that you could find benefit in respite, and this will translate into being able to care for your dear Dee for longer at home.

Only my opinion, but I think you are doing the right thing.
Please let us know how things develope. Take care now.

 

[jude1950]

HI Cliff,

I can only echo what the others have said especially Hazel.
last August I had no choice but to let Jim go into emergency respite and I was totally unprepared. With Hindsight I would have preferred to have had some time to select a place for Jim starting with a few days respite and preparing the ground for full time NH care but that wasn't the case and instead he has had to move twice making it stressful for us both. You have been a wonderful carer for Dee and as this terrible disease progresses you will need more help. I admire your courage and strength in coping with Dee's Illness but it is time my friend for you to lay down some of this burden aand consider your own health and well being.
regards

Judith

 

[christine_batch]

Dear Cliff,
As a disabled Carer, I was not given respite. Due to useless S.W.

I wanted to care for Peter at home with the help of daily Carer coming in.

A year previously, the Consultant said Peter needed to be placed in E.M.I. Unit. I said I am not giving up. So during that year I had with Peter, I looked around for what Care Home was the best for Peter. When he had to go, it was to the Care Home I had chosen (I had taken Peter there with his Carer to look at it) he chose which room he wanted.

You have devoted so much love in your caring for Dee but then comes a time when you need a break.

I agree with other posts, from those who have been in the same position. We only want the best for our loved ones.

Sending you and Dee love and best wishes.
Christine

 

[barraf]

What you are doing

Hello Cliff
I am in the same position and age (80 next week) as you and I have done exactly as you are proposing to do.

I have cared for Margaret for 10 years and it took a lot of heart searching and worrying before I would take advantage of respite care.

Having done so however, I definitely feel the benefit and feel able to carry on caring in between respite visits.

Margaret shows no objection or discomfort or dislike of the home, which also eases my mind, and prepares me for if, or when she has to go into permanent care.

So my advice for what it is worth is go ahead and take advantage of any respite offered.

Cheers Barraf

 

[117katie]

Dear Cliff

I would like to echo what everyone else has said so far – although I have not been in your situation and having to make the kind of decisions you are thinking about.

As Susan and Hazel said “Your love for Dee shines through” and “will not stop”. And that is most certainly something that I have seen in you, too! As Betty said “be sure to look after yourself” - advice always offered but often hard to follow.

But the sparkle I have “read” in you will, I feel sure, be refreshed and strengthened, once you are happy that you have made sure that both Dee and you are doing the best you can for each other. And you will be.

My best wishes to you and Dee.

Love from
Katie

 

[bclark]

dear cliff i am in the same situation at the moment, i need some respite as soon as possible, there are some good homes, where i live. but i know he will feel lost without me and the dog and familiar surroundings. perhaps you could tell us if it was a success if you go ahead. thank you all the best b. clark

 

[gigi]

Hello Cliff,

I agree with everyone..and am full of admiration for you.

It's so sensible to make this a gradual transition for both Dee and yourself..to a place you are comfortable with..and I'm certain Dee would be in full agreement with your decision!


Wishing you both well for the future.

Love Gigi xx

 

[Cliff]

What a marvellous response.

Thank you all so very much. I am surprised how positive your responses have been and how many of you have been there.

The difficult part is the first step. I have spoken to the RMN's at Dee's clinic and they are very supportive. One is chasing my SW with whom I had zero response in an emergency before Christmas, and the RMN has already told the Social team that help is needed and urgent. So I will be leaning on her as I take the first steps - hopefully, this week.

I am so grateful to you all.

Thank you and how others manage without TP, I do not know.

 

[Margarita]

So I will be leaning on her as I take the first steps - hopefully, this week.

Wishing you all the best in taking that first step


It is hard taking that first step for you both , but like other have said it is a good idea , as in my experience in mum going to respite, even thought she found it unsettling at first , I found now she settle in respite more then any day centre she been to.