I need to get this off my chest..?

[katie53]

So long story short, my Mum got diagnosed with early onset Alzheimers 5 years ago, when I was 16. I am now 21, and she is 61. She rapidly declined and now is at the severe stage where she's more like a child than an adult.

Throughout my life I have had to make sacrifices. I wanted to do a Medicine degree, I got accepted for it etc, but had to decline because it would have been too big an impact on the family. I am now doing a Pharmacy degree in Cardiff (which I do enjoy), but I am having to restrict my life to move back home to Portsmouth in order to help care for her. This is all fine, and is just an aspect of life (although I obviously wish it were different). I cannot have a relationship because it takes up too much of my time/people don't understand, but if I complain about it even slightly to those who don't have an experience of this they call me attention seeking because 'everyone has problems'.

I have to come home a lot to help my Dad out because he's had to increase his work hours to make up for the loss of money we had. My Mum was a teacher, and her retiring young was a very messy affair. I'm in my third year of University out of four, but this is widely considered to be the most important year because job offers are made this summer so grades are very important. I have extenuating circumstances, which has helped in the past where things have taken a drastic turn for the worse, but right now it doesn't feel like enough.

However, here's the catch - I have three siblings, and their life doesn't seem impacted in the slightest. I'm sure it probably is, because they were always much closer to my Mum than I was, but where the hell are they?! My older sister (31) lives away from home but never visits. My older brother (29) lives in the same city, is getting married and also never visits. My little brother (18) works part time but doesn't do anything to help around the house. I've mentioned before that I'm not coping with the house cleaning and feeding/washing her along with other aspects of my life but no one seems to listen.

My friends try to understand but in reality they can't know how difficult this is. I essentially act like a primary carer who lives 3 hours away but I feel like I'm at the stage of life that will have the most impact on my 'proper' adult life and I can't fulfil it to the same potential that they can. Sure, my little brother is 18 and is probably just as upset as I am, but he lives in his room and throws her out when he tries to come in. I spoke to my Dad about this and he just got upset with me and said that I'm able to escape but he's stuck with this forever.

My Nan had Alzheimers, and died about 3 months before my Mum was diagnosed. My Mum did all of the caring for that when her brothers didn't visit my Nan for years, and I feel like I've lost the life I could have had because my siblings seem to be ignoring the problem.

Is there anyone else out there who's having the same problems as me? I can appreciate that having a partner with Alzheimers is difficult in different ways, ie losing the one person you care about, but I had a quick look around the forum and I couldn't find anyone close to my position. I don't know what to do.. I don't want to resent her. She's my Mother.

 

[Wolfsgirl]

Hi there so very sorry to hear your story but am amazed at the positive way you are dealing with it!

I am wondering if Attendance Allowance is being claimed which could be spent on carers coming in to help alleviate the situation e.g. personal care. I think you should contact the GP and get advice from Social Services who will do all they can to keep your Mum out of a care home (as it is cheaper for them!).

Your siblings are being selfish - I would draw up a rota of jobs and ask them to volunteer and put it in writing to them even if it is just one hour per week for chores and a whole day once per month at a weekend?

Does your Mum attend a day centre?

Very best wishes - please keep updating as it may help someone else x

So long story short, my Mum got diagnosed with early onset Alzheimers 5 years ago, when I was 16. I am now 21, and she is 61. She rapidly declined and now is at the severe stage where she's more like a child than an adult.

Throughout my life I have had to make sacrifices. I wanted to do a Medicine degree, I got accepted for it etc, but had to decline because it would have been too big an impact on the family. I am now doing a Pharmacy degree in Cardiff (which I do enjoy), but I am having to restrict my life to move back home to Portsmouth in order to help care for her. This is all fine, and is just an aspect of life (although I obviously wish it were different). I cannot have a relationship because it takes up too much of my time/people don't understand, but if I complain about it even slightly to those who don't have an experience of this they call me attention seeking because 'everyone has problems'.

I have to come home a lot to help my Dad out because he's had to increase his work hours to make up for the loss of money we had. My Mum was a teacher, and her retiring young was a very messy affair. I'm in my third year of University out of four, but this is widely considered to be the most important year because job offers are made this summer so grades are very important. I have extenuating circumstances, which has helped in the past where things have taken a drastic turn for the worse, but right now it doesn't feel like enough.

However, here's the catch - I have three siblings, and their life doesn't seem impacted in the slightest. I'm sure it probably is, because they were always much closer to my Mum than I was, but where the hell are they?! My older sister (31) lives away from home but never visits. My older brother (29) lives in the same city, is getting married and also never visits. My little brother (18) works part time but doesn't do anything to help around the house. I've mentioned before that I'm not coping with the house cleaning and feeding/washing her along with other aspects of my life but no one seems to listen.

My friends try to understand but in reality they can't know how difficult this is. I essentially act like a primary carer who lives 3 hours away but I feel like I'm at the stage of life that will have the most impact on my 'proper' adult life and I can't fulfil it to the same potential that they can. Sure, my little brother is 18 and is probably just as upset as I am, but he lives in his room and throws her out when he tries to come in. I spoke to my Dad about this and he just got upset with me and said that I'm able to escape but he's stuck with this forever.

My Nan had Alzheimers, and died about 3 months before my Mum was diagnosed. My Mum did all of the caring for that when her brothers didn't visit my Nan for years, and I feel like I've lost the life I could have had because my siblings seem to be ignoring the problem.

Is there anyone else out there who's having the same problems as me? I can appreciate that having a partner with Alzheimers is difficult in different ways, ie losing the one person you care about, but I had a quick look around the forum and I couldn't find anyone close to my position. I don't know what to do.. I don't want to resent her. She's my Mother.

 

[garnuft]

I think you have too much to bear.
It's unfair for your Dad to expect you to take over the care of your Mum.
I would not be available to give that help if I was you, have lectures and stuff on the times you are required.
The only problem is if Dad is helping you financially then you may feel obligated.

It's wrong of your Dad to expect you to pick up the pieces, you are at an important stage in your life, mistakes now will set you off track and you may never recover, it's hard enough for graduates who have an easy time at Uni to secure a job never mind someone worn and torn in half like you.

I understand your Dad is stressed beyond endurance but the answer isn't to just pass the stress onto another family member.
Let alone your child.
I'm a Mam and the last thing I would want would be for my needs to hold my children back.
If I were you I would write all these things down and give a copy to your Dad and older siblings.
Your Mum needs help but you will lose out too much if they keep relying on you to provide it.

You are feeling hard done by, that's because you are, you've had it rough.
Keep your eye on your dreams. X

 

[hopeful56]

I agree with Garnuft. It is unfair of your father to allow you to be burdened like this, without your siblings doing their fair share.

I would let your dad and your siblings know that you have to devote the next eight weeks (or whatever period seems appropriate) to your studies and will, therefore, not be available to care for mum during that period. You dad will then have the option of getting in some professional help, asking your siblings to pitch in, or put mum in residential care - but it is HIS CHOICE. No one has a responsibility to care for another adult, not even spouses, but he does have a moral responsibility to ensure she is cared for by putting in place appropriate interventions.

You could show him your posting on TP and our replies as a way of starting the conversation if you find that difficult.

Good luck with everything.

JJ

 

[LYN T]

My Darling

How have you coped with this situation for so long?

Now is the time to step back and take the advice given by the previous posts.

This is your time to make something out of all your hard work. Guilt is something we all feel but you must try to ignore that particular monster and continue to strive.

Hugs from Lyn T

 

[EllieS]

Hi there
You are young, be young, be determined to do what's right for yourself - you will always find time to love your Mm and your Dad because that clearly is how you're made. You won't change your siblings attitudes and you may well alienate them. Your dad is key. I suspect that whilst he really knows the unfair pressures your are bearing, he's probably too scared for the future that he's missing it!
He needs help from The professionals whose jobs it is to help, ie GP, cpns, they should be assessing your Mum's needs and putting in place whatever they can to help. Ask your dad If he would mind you giving the GP a ring to arrange an appointment at home perhaps to discuss the start of these actions. Stand firm, stay strong and let them support your family It is their job!
Take care and stay strong
X

 

[CALLYDG]

Hi Fornikatie

You are so young to be so pressured with all this. I've done a degree and I know how hard it is, but to look after your mum too...phewwww! My dad has vas. dem. and has hit the same stage; he is conversing to the dogs' stuffed fox, the TV and a wall at the moment. He is constantly telling stupid jokes and making daft comments. My dad can eat OK, but struggles to walk. I really know how you feel! My heart goes out to you.
My personal advice is to carry on with your degree and get a career. It's what your mum would have wanted for you. Your mum, like my dad is is entering their final stage. They don't know whats happening any more. It's very sad, heart breaking in fact but If you don't carry on, the chances are you will regret it. We don't know how long our parents have left and it's not fair on you to do every thing and spoil your career. You need to be able to talk to someone, me if you wish, or some-one close to you. You sound really worried. I understand, but you can only do so much. Please please think of yourself now. Your degree is your future. I hope I don't come across as being selfish.
You need help! Can you get together with your siblings and talk with them? It sounds like they need a swift kick, to get them moving. Your younger brother should definitely help out! If not, can you get a cleaner in for a couple of hours? I wouldn't worry about the cleaning (it will be there next week) apart from the bathroom. I take that your mum needs feeding?
For YOUR own benefit, work hard on your degree; you will do it!!! Don't take this load by yourself. There is lots of help available for both your mum and you, please ring some-one, you are not by yourself. You being 3 hours away will be tough, because you can't oversee her. This is were you need help, please don't wait.
I know how hard these different stages are, bare with it, it will get better!!
I try to find some humour in the comments.

Luv Callydg

 

[keegan]

Hi, my hubby has this terrible disease he was diagnosed at 59. We have a young son of 5 and another who is 22 and is at university final year this year. Fortunately hubby was diagnosed after he started otherwise I don't think he would have gone to uni (he lives out) as he would have felt he should stay home to help me. Now that he is going to finish I want him to go and explore things and visit other countries maybe even work abroad, however he thinks he's staying home to work locally and help contribute to the house. I feel for you as if roles were reversed and I was the one with dementia hubby probably would not be able to cope and son would have to put his life on hold. However that is not the case all I can say is this disease in our case is slow but continual and although things are not going to get better I don't think everyone in the household should suffer. Do what you think is best for you, live your life with no regrets whether they be out duty or love otherwise tomorrow it could eat you up. By the way having son at home will be making more work for me...........

 

[JaneDee]

I am wondering if Attendance Allowance is being claimed which could be spent on carers coming in to help alleviate the situation e.g. personal care.

Hi, just to chip in but at your mum's age it would be DLA that she would be eligible for. https://www.gov.uk/dla-disability-living-allowance-benefit/overview which is not a means tested benefit. My mum is 64 and is almost as dependent as your mum and she has just been awarded the highest rate for care.

With regards to distant siblings, I do understand where you are coming from. My brother lives 'down south' and visits twice a year. My sister who is local most weekends visits once a month or so and I go twice a week +. I also have a full time job and I am studying a degree and it does cause me a great deal of stress at times. I am very thankful to my dad who does everything for my mum but does struggle at times. At the moment they have no outside help.

I find this forum very supportive (and sometimes critical), it is just nice to know that there are people out there who are 'in the same boat'. My friends do not understand and my boyfriend tries to understand the best he can. I find myself trying my best to 'manage' but I am plagued by sad thoughts and continuously miss my mum and wish I had asked her things before she 'lost' that part of her brain.

If your mum is not receiving DLA already please seek advice and apply, Citizen's Advice helped us with our application. Social Service may also be able to offer a care package or respite in order to give you and your dad a break, do this before you reach 'crisis point'. You have to look after your own health and mental well being.

Take care x