Don't know what else I can do - please help

[EmmaMcB]

I am 21 years old and my grandfather is in the middle stages of Alzheimer's. My grandmother is his main carer, and is fantastic 75% of the time, mostly due to my mother being incredible and devoting all of her free time to looking after them, whether this is on the phone to them or having them at the house. My mum and dad have their own businesses, so don't have much free time, and the free time that they have is spent looking after my grandparents.

I was, well I suppose I still am, very close to my grandad. He's always been someone who I've looked up to, and almost idolised. I have almost come to terms with the fact that we have ultimately lost him. The part that is now hardest is the repercussions on the rest of my family.

My mum receives upto 15 phone calls per day from my gran, and around two visits per day from them, normally a day a week of having my grandad round at ours and then them both round all day sunday. She recieves no help from her brother in all of this.

My mum is amazing but she lost it, so to speak, tonight, and I am absolutely distraught.

I am a student in Manchester, and I feel complete and utter guilt that I went to university around the time of my grandad's diagnosis, I wish that I never went. I am in my fourth year of medical school, so it's only another 18 months and then I can move home. Although home is only 45 minutes from Manchester.

I phone my grandparents every day, in the hope that it is one less phone call for my mum. I come home every weekend to try and help my mum. I clean the house, and cook every sunday for everyone. With me being at university it'snoteasy for me to do much more, and I feel so guilty.

I hate the situation that we are in, it's a living nightmare. I can't stop crying. Has anyone got any suggestions?

Thanks for your help.

Emma

 

[Margaret W]

Emma, I have lots of suggestions.

Number 1. Cut the guilt. There is no way that you can help being 21 and in the middle of a University course when your grandad is diagnosed with dementia. Your grandad would be devastated to think that his illness might cause you to feel guilty. I know you mean that you are away from home when the family might need you, but that is not your fault. You go home every weekend and cook for them. You are a star daughter (mine would have done the same). There is no need for guilt my love. You are being most supportive and loving, and I'd be proud of you if you were mine.

Number 2, don't even think about giving up your medical course or even slacking off in order to help your family. They would be devastated if you put your degree at risk because of this current problem. Your grandad would feel even more guilty than you feel right now if he felt that his illness had spoiled your degree chances.

Number 3. Make your tutors aware of your situation. They may understand, they may not. It depends what experience they have had of life. Some people have never heard of dementia and have not a clue how draining it is on families with such a member, but make them aware of it. In fact, present them with a short document outlining the main pressures on yourself. And make sure it is recorded on your file. Consult the Uni psychology team too, and get it documented there. Just in case. Tell them how stressful it all is, but that you are trying to cope.

Number 4. Try to stop crying. It doesn't help anyone else, and it will make you feel exhausted. Instead, try telling yourself that you and your family together, as a team, are doing your best with the situation. And indeed, you do sound very much like a team. You say your mum lost it tonight. Your role is perhaps to talk her back again. She is probably like you, a very strong lady, who works her socks off to make things right, and gets very upset if it goes wrong. Keep reassuring her. That is your role.

Number 5. Suggest (if it is not already happening) that your grandparents have some help from social services - day care etc. It does help to give everyone a few hours breathing space, even if they have to pay for it.

15 phone calls is a day is very draining. We had it with my mother in law, and there wasn't anything wrong with her.

I don't think you can do any more that you are doing, and what you are doing is absolutely right and brilliant. It is a pity about mum's brother, but that happens.

Keep strong Emma. It sounds as though you are. But even the strongest of us get down sometimes, so come on this website and cry and scream and yell. We will listen.

I am not the most flowery of people (that's the wrong word, but I can't think of a better one). I am down to earth and pragmatic, an approach which I think is needed in your case.

All my love

Margaret

 

[Tender Face]

Emma, your love and admiration for your mum (let alone your granddad) jumps out from the screen.

Margaret has given a wise and pragmatic approach – forgive me for doing the ‘emotional’:

You know what I’d appreciate most in your mum’s situation? A great big hug from my wonderfully sensitive (grown-up) child just telling me they loved me. You know, we ‘mums’ do ‘lose it’ sometimes .... and being forgiven and accepted as human and not always able to be some ‘super-mum’ who can be all to everyone all of the time means a lot .... especially when it is recognised by those who mean the very most to us ....

I’d even consider how about you ringing mum occasionally instead of your grandparents? Sure, you think she is under stress with the number of phone calls but have you ever wondered the delight when it’s from someone NOT causing her stress ... imagine how she would feel and you just rang to say ‘I love you, mum’?

In a sense, I think that’s Margaret’s idea of a ‘team-work’ approach – it doesn’t have to mean cleaning and travelling – it’s also about being emotionally there for each other ..... and just being appreciated (let alone reminded you are loved) can make a whole world of difference ......

You are essentially trying to ‘care for the carer’ when you are so emotionally challenged yourself by the circumstances ... it is so hard ... I so feel for you ... but I doubt many people would suggest you sacrifice your own future and education to get through this particular stage .....

Do you think you and your parents and grandparents could benefit from AS support locally .... http://www.alzheimers.org.uk/site/custom_scripts/branch.php?branch=true&branchCode=12646
It might be worth calling them to find out what support could be offered to you all locally?

Stay strong ..... (and that doesn’t mean unemotional – it comes with the territory!)

Much love, Karen, x

 

[Pollyanna]

Hi Emma

I can't really add to the fantastic advice given by Margaret and Karen but I wanted to reply.

How you feel is perfectly normal, you have no need to feel guilty but you do.

You have come so far with your university studies, that you must not let what is happening with your family stop you focusing on that. Imagine how proud they will all be on your graduation day!

A year ago, my Mum was in a similar situation as your Mum. Her brother gave no support and she had to take control, but she was always worrying whether what she was doing was the right thing for her Mum and that her decisions would not upset her brother.

I felt guilty because I wanted to do more to help her and my Nan, but practically there was very little I could do. I took the pressure off by visiting when I could, so Mum had a day off, but it was my Mum my Nan wanted, it's Mum that made her feel safe.

Mum felt guilty that while she was with my Nan, she didn't actually spend any quality time with her. She was shopping, cleaning, paying bills etc. She didn't sit and talk to her.

When we went together it was better. I spent time with my Mum, I could sit with my Nan as Mum did the tasks she had to do and we'd spend time together the three of us. I always insisted we took cake

My Nan's in a care home now, it's taken the day to day pressure off my Mum becuase she knows she's safe, but there is still guilt.

Your Mum is entitled to 'lose it', I think that's a natural reaction. I agree with what Karen has said about making your Mum know that you are there and that you want to help and support her. Emotional support is just as important as practical support.

It's nearly Christmas so you'll be home soon, you'll be able to support you Mum and spend time with your grandparents.

I wish I could tell you how to stop feeling guilty, how to stop the tears, but I can't. Unfortunately, it's part of the package!

Polly

 

[Michele]

My mum is amazing but she lost it, so to speak, tonight, and I am absolutely distraught./QUOTE]

Hi Emma,

I am afraid this happens to a lot of us. We all lose it every now and again. I have with my 3 step-sons, but I haven't meant it directly to them, and I am sure your mum is the same.

Your education is very important and I think you are amazing doing this and also be a very caring grand daughter and daughter.

Please don't feel guilty, you do so much and remember you have a life too.

Take care
Love
Michele
xx

 

[Christinec]

Hi Emma,
You have had such good replies not much I can add but had to respond as my daughter is about your age, studying and has been affected by alzheimers. She has also had to watch her Gran being lost to the disease and her Mum losing it. Unfortunately my relationship with my Mum and her main carer was very strained but for 8 years trying to support them was a regular part of our lives. Your family sounds much more loving and normal.

When I lost it my daughter was fantastic she was the one who was able to make me feel that I still had some worth. Sounds like you are doing a wonderful job supporting your Mum - Mums can never have enough hugs from their daughters and being told I have managed to be a good Mum does it for me.

BUT my daughter has her own life. She has had to live with the disease for the last ten years and it has affected her growing up a lot. I am so glad that is now away from home studying and having her own life. I am so proud of her for doing what she is doing. You are only young once. Please do not let the situation mean you miss out completely on this stage of your life. Neither your Mum or grand parents would want this.

It sounds like your Gran and Mum need more support from the care services. There are limits to what families can do and the Alzheimers Society is a good place to start looking at how you go about arranging that help.

XX

 

[mandj]

Emma,

A lot more professional support and input is needed I think for EVERYONE here. I'm quite new to all this but that's my simple message. Social services / local authorities / AS / Age Concern...

You can't take all this on forever,,,,we are ALL entitled to our own lives, albeit it some of it being about helping our loved ones.

More hands on the tiller! Social services have a 24/7 emergency number if you didn't know and need it out of office hours...

Good luck and best wishes.

 

[Padraig]

Enter his world

Emma,
This may appear strange to you. I would suggest that this is a wonderful opportunity to look and learn. When I visited my wife in a NH I can still recall the name of many patients; May, Burt and Nester just to name a few. On the surface Nester's hair was thinning, she had just one tooth and her glasses were often frosted. But behind the outward dressing there was no mistaking the beauty of a young girl in the her eyes when the years were rolled back. I mention her in my book because she still holds a place in my heart.
Your loving Granddad is very much still there. Enter his world by turning back the pages of time and learn about his youth.
Time and love are the most precious gifts that costs nothing. As I've told our children and grandchildren each moment of time spent with loved ones are everlasting.
We can't make, buy or borrow time, (though we say so)no one knows how much we have, nor when it will run out, as it surely will for us all.
Now is the chance to avoid the; 'if only' or 'I wish' later on.
Padraig