How do I care for the carer?

[Rosie123]

Hello all,
I am so happy to have found this website, my Granddad has just be diagnosed with Alzheimers and it's great to know there is so much support out there.
My dad and aunty will be caring for my Granddad, whilst the rest of the family will be there to give support, it is mainly them who will sort out the finances, hospital appointments etc. I can't help but feel so awful because whilst I am devastated for my Granddad and already know how frustrated and down he is, I can't stop thinking of the pain and heartache my dad and aunty must be going through. My dad is a strong, amazing guy (like his dad) but I just worry so much for him as I know he won't ask for help if he needs it. How do I care for the carer? My dad raised me and brother as a single parent so he's a tough guy, but I can already see how this is going to eat him up and I know 100% he will not ask anyone for help. I hate to think he will suffer in silence.
I am sorry if I sound like some naive idiot and maybe I should be more concerned with directly helping my granddad, but after speaking with my dad today my heart literally ached and I was lost for words (for the first time ever!) . I just thought if anyone knows of anyway I can ensure my dads health is ok and maybe anyway of encouraging him to seek help if he needs it then that would be awesome.
Thank you for reading and big kisses to you
R xx

 

[sistermillicent]

Hi Rosie and welcome to Talking Point, I am sorry your Grandad has this horrible illness.

You are CERTAINLY NOT a naive idiot, but a really caring and loving daughter and grandaughter.

My mum has AD and like you I worry most about my Dad I think, and have tried hard to support him through the long time he has been caring for mum. He does not want to ask for support and is fairly pessimistic about anything I suggest as a rule. He has now got help, so we got there in the end, and he likes having it.
The first thing to do was to get him to accept the help from me.

In the meanwhile it may be helpful to your dad to research things for him, to keep records of hospital visits and who said what and when things are meant to be happening, and who is who etc etc. Things get very muddled even for the carer. You can do this discreetly or agree with your dad that this is your role.

I printed off posts from here, factsheets from here and articles I found on the internet, and kept up to date with what was happening with the drugs like ebixa which has just been allowed on the nhs.

Most importantly I can tell you that my dad never used to talk to me much but this has brought us so very close together and now we talk nearly every day on the phone (my parents live a long way off) and he is able to tell me what he feels.

You could also suggest your dad comes onto TP as he will find support here.

Love Pippa xx

 

[LilyoftheValley]

My Dad was my Mum's carer until his death last year. Although I visited them daily I realised when I lived with Mum for 10 weeks, just how tiring it is.

To be honest, my only salvation was when someone else sat with my Mum so I could go and look after my horses for 2 hours each day.

My Dad never had a break - Mum would not go to Day Centre and the strain on him must have been enormous. I don't know how he coped.

My advice to you would be to give him a regular preplanned time for himself. Doesn't matter whether it is daily or weekly or monthly. It is time he knows will be his when he does not have to be caring. He will probably not ask for it. My Dad did not - I wish he had.

I realise now that as soon as he came to my house, with my Mum he would fall asleep. He could relax as we were there.

I only wish I had done it more often. He might not have had his heart attack.

At least you are thinking ahead of how to help. What a grand lass you are.

 

[Bastan]

Hi Rosie

I think Pippa has said it all, what a wonderful post.

As the main carer for my husband I did it all for a good while, however for the majority of us as the disease progresses we welcome help. So don't worry too much for now.

Bastan. xx

 

[Linda J]

Hi, and welcome.

My Father is the main carer for my Mum. I do a lot of things for then both. My Mum goes to a carers centre once a week, only because SS have got a waiting list.

Found out what the phone number is for the carers centre is, they are there to help you.

Linda x

 

[Christin]

Hello Rosie and welcome to TP. I would say you are already helping so much simply by taking the time to ask the question I am sure you are a wonderful support already.

It is very important that carers are taken care of and one of the things you could do is to encourage them to apply for assessments, your grandfather is entitled to one, and his carers for their own.

This link may help you.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

Very best wishes to you all.
x

 

[sharina]

Caring for the carer

I agree with everyones advice.

I used to give my father Monday as his day off.He would go to business meetings and I would have mum.I would cook a decent meal and he would meet us for a late lunch.

I would also take my mum to medical appointments as they were quite traumatic.I would also do the hairdressing run sometimes.

In addition I would cook a couple of meals twice a week that I left at their house.

Other members of the family did things like their gardening or would sit in a cafe whilst my dad did the weekly shop etc.

I would also do the clothes shopping for my mother including getting her fitted for underwear as it was quite an ordeal.

 

[jimbo 111]

Hello Rosie
By nature I think I am a bit like your Dad
My wife had AD and I used to refuse help,
she would not go to day centres or accept help from anyone but me,as a consequence I was looking after her night and day
When her condition deteriorated I really was exhausted
One thing that gave me a lot of comfort and help was logging on to Talking Point I did not contribute much in the way of posts myself but reading of so many members problems , and the suggestions of other members trying to be helpful and reassuring,gave me a lotof help and useful information
Does your dad use the computer??
If he does you tell him from me (another independent (ex) male carer)that this Forum gives you the insight of all the carers problems associated with AD without losing that feeling of being capable of doing it all yourelf (and knowing in your heart that the time will come when you do ned help)
The majority of posts are from the ladies (Just as well because they seem to have more sense than us men)
but more importantly male or female they are All carers with
the same problem looking after loved ones with dementia, AD, or call it what you will
If possible please try to persuade your dad to take a look
at Talking Point I guarantee, from my own experience, He will not regret it,
jimbo 111

 

[Rosie123]

Thank you

Wow! Thank you so much for all your responses. I guess if I could show my dad this website he can read everyones experiences and advice without the pressure to do any sharing. Although I hope he will as I think it would be good for him but I certainly won't pressure him too.
Thank you for all your advice, it's been a huge, huge help!
thank you, thank you, thank you xxxxx

 

[kd7279]

Hi Rosie,
I can echo Jimbo111 in that I care for my wife and have found lots of support and advise on this site. You only have to post a question and within minutes there are replies. This makes you realise that there is support out there, even in cyberspace.
Keith

 

[Haylett]

Being there

Dear Rosie,

Everyone has given you brilliant replies in advising you how best to help your Dad. Giving him his own time, without him feeling guilty for taking it, is fantastic. Letting him have a good grumble if he needs it to someone like you, who understands that he is not grumbling about his father, only about the illness and the frustration. Planning the odd treat (if you can) - and sandwiches in the park qualifies as a great treat, especially if you can find someone to care for your grandfather, so your Dad can have some quality time with you! It doesn't have to cost too much. Keeping records for him is a great idea and doing a stack of ironing or some cleaning is also terrific. Don't ask, just look, then quietly do.

But the best thing of all is that you care about both your dad and your grandfather. As a Mum whose children have grown up having to take a share in the caring, I can tell you that just being you and standing by your Dad is everything. I don't think I can ever tell my own boys how much joy they give me and how proud I am of them. My mother used to tell me (especially when mine were being a bit naughty) that "all children come from heaven". I used to think that was pretty icky frankly. But schmalzy or not, she was right. It sounds like you are a lovely and very loving daughter. You are the brightest star for your Dad, so you keep shining for him. Hxxx

 

[BeckyJan]

Dear Rosie:
You have had good advice already.

It may be worth you or your Dad telephoning the local Alzheimer's Society as they can give good advice on local support. Many organise local meetings (cafes) which may be coffee mornings, lunches or general 'get togethers'. I took my husband along to these and found them informative as well as making good friends in a similar situation.

I can understand your Dad's reluctance but on hindsight I am grateful that I did these things during the early stages.

I did not want others involved in the early days but as the disease progressed it became apparent that outside support was needed.

Will your Dad read these posts and find for himself the support that TP can offer?

 

[jessibee]

Caring for the carers

I was the sole carer for my dad until I got my brother to join in about a year ago. My sister still doesn't really seem to want to get involved, but at least I am not on my own with it anymore.

What I would like more than anything is for them to ask how I am, not just about dad all the time, and perhaps do some of the phone calls or form filling for me. Don't get me wrong, my brother is a great help, and does do quite a bit of those things, but my sister doesn't even phone me anymore.

It's also good to hear that I am doing a really good thing by trying to help enable my dad to stay in his own house for as long as he wants, to be his memory for appointments, organise his care, get his shopping delivered, and talk to him as if there's nothing really wrong.

Your dad and aunty will get through it if you just keep on loving them and showing them that you do.

Be brave, but show how you feel as well. It might help your dad to show how he feels too.

 

[RosEpping]

Thank you so much everyone for this subject

Hi everyone
I also worry far more for my dad who is mum's main carer than for mum herself.
I spend a lot of time with them, but I feel dad also needs emotional support which I can't give.
I now see that if I can get him to start reading so many of the posts in Talking Point, he may gain some sort of peace from being in touch with other people who are in the same situation but not so personally involved with us.
Thank you again to all of you.
Ros

 

[rogergo]

Just been there

Just be there for your dad, I have just gone through the same with my dad mum is now in a care home as crisis point was reached with my dad being main carer, he knew it would happen but found it difficult to ask for help. We all need a hug now and then even the toughest dad.

Love Geraldine

 

[Angelica May]

Caring Daughter

Rosie, you sound lovely and you have already focused on the positive in that your Grandad's condition is bringing you and your Dad closer.

I'm no expert - but the advice I will offer is this:

If [when] your Dad snaps at your Grandad over something you feel is trivial, then turns on you or your brother - please don't get angry - he's trying to cope but sometimes it's all too much.

And if you find Grandad sitting in the kitchen with his coat on over his pajamas - don't demand to know why your Dad is ignoring him - I guarantee he's probably told him ten times in ten minutes he can't go out like that and please take off his coat!

And if your Dad hands him a pill and he asks, 'Is this for me', and your Dad says, 'No it's the dog's worming pill but I thought we'd have a change today,' just smile and make him a cup of tea because he's having a bad day!

 

[suzywoozie]

Hello Rosie

First of all, the above post made me laugh so much because it sounds so familiar!

You sound like a brilliant daughter, just as my daughter is, and the best thing she does for me is to listen. When I have a bad day with Dad, what really helps me is to be able to vent, moan, complain, share my exasperation and so on. It's mega helpful to have someone you can sound off to.

So I would say that phoning him every day would be the biggest help ever, more than you would realise.

 

[Kimina]

Help for the Carer

Hi Rosie,

You have had lots of good advice to date, but I didn't notice anyone suggest you contact your local St John's Ambulance Society. They run courses for carers over a few weeks duration that covers all the aspects of caring that we all may face over time.

Also, if there is a local County Council-led support group, they often provide training and/or a carers support groups at the local GP surgeries that may also be of help to your Dad. To find out for him, have a look at your local County Council website (it's usually the name of the county you live in followed by 'gov.uk' ie 'Devon.gov.uk'

It's also useful to let your Dad's GP know of his caring duties so they can keep an eye on your Dad's health. Where I live there is a pilot for carers where we can go and have a Health and Well-being Check with our local surgery but it ends on 31st March 2011. I'm not sure if this is a UK-wide trial, but you could always ask your Dr's surgery if they are aware of one.

With a wonderful daughter such as you, I'm sure you'll get through this difficult time together. I wish you all the best.

Kimina. x

 

[earth angel]

hi

Hello all,
I am so happy to have found this website, my Granddad has just be diagnosed with Alzheimers and it's great to know there is so much support out there.
My dad and aunty will be caring for my Granddad, whilst the rest of the family will be there to give support, it is mainly them who will sort out the finances, hospital appointments etc. I can't help but feel so awful because whilst I am devastated for my Granddad and already know how frustrated and down he is, I can't stop thinking of the pain and heartache my dad and aunty must be going through. My dad is a strong, amazing guy (like his dad) but I just worry so much for him as I know he won't ask for help if he needs it. How do I care for the carer? My dad raised me and brother as a single parent so he's a tough guy, but I can already see how this is going to eat him up and I know 100% he will not ask anyone for help. I hate to think he will suffer in silence.
I am sorry if I sound like some naive idiot and maybe I should be more concerned with directly helping my granddad, but after speaking with my dad today my heart literally ached and I was lost for words (for the first time ever!) . I just thought if anyone knows of anyway I can ensure my dads health is ok and maybe anyway of encouraging him to seek help if he needs it then that would be awesome.
Thank you for reading and big kisses to you
R xx

hi rosie,i think your right, as the people that care for others have a tough time especially when its someone so close as a parent, they need alot of support , i believe its just as hard for the carer sometimes as it is for the person going through it,we often feel helpless and want to do more for them, with your dad just keep an eye on him and try and find a support group near by as he may need more help in the future and understanding of the illness is a great help too, you may have to push him into going but he will know your only trying to help him, as it gets very draining and tiring, but love wins all as always and your grandad will sense that love that is one thing that will never change , your very caring and its so nice to know that your there for him and to give him support x

 

[mick_wild]

How do i care for a carer

Hi Rosie,eveyrone has given you such great advice but like you i am caring for a carer and it was so great to see your posting because this in itself is such a difficult role. My husband looks after his Dad whos behaviour is extremely challenging (he is very abusive and quite violent) and every day is different.
Your Grandad sounds like he is in very good hands with your dad and your aunty. Your dad sound amazing. Unfortunately i have no great words of wisdom. All i can do for my husband is listen when he needs to talk and to be there to reassure him. You are not a naive idiot you sound like the rest of us just trying to get through this in the best way we can
Good luck to you and your family
look after yourself
love Amanda x