My mum has AD and Parkinsons

[Michelle-A]

Hi I am new to this site and just wanted to introduce myself.
I am 24 years old and my sister is 27. Four years ago my mother was diagnosed with early onset alzheimers at the age of 49. My sister and I had been caring for our mother and since the day she was diagnosed she has deteriorated into a person I hardly recognise. About two years ago my mother was also diagnosed with parkinsons. My sister and I have been living a nightmare for the past four years on our own. Being two young women in our twenties, our lives have been consumed by my mothers illness.
Six months ago, as my mums condition worsened, we could no longer give her the 24 hour care she needed, and with much resentment, she went to live in a care home in Manchester as it was the only "suitable" home in the whole country which I find shocking!. However we have had numerous problems, and with us living in Essex, Manchester is too far to travel to see my mum whom i love so much. It breaks my heart. On a recent visit to see my mum (this week), My sister and I were shocked at how much my mum has deteriorated. Things she could do six weeks ago, she can no longer. I don't think she even realised we were there. I cannot accept that this is happening to my mum and feel so alone. I feel like my mum died a long time ago and her body has been taken over by these both very cruel illnesses. My mum looks like she is wasting away and I wonder how much time she has left. I cannot believe her rapid deterioration. I have been told that younger people do generally deteriorate much quicker, but I cannot believe the difference in my mum compared to weeks/months ago. I am heartbroken and me and my sister only have each other. My sister and I now feel guilty that maybe she has got worse since going into the care home and blame ourselves. We are at breaking point and I miss my mum so much. I need to know that I am not alone, as I have thought for so long. I just wish I'd had come on this site a long time ago. I guess I just haven't been able to accept it. I am sorry for the long message.

 

[Anne54]

Dear Michelle

You are not alone now that you have found TP. Be kind to yourself, we all do the best that we can, and you are not supper human. But Manchester from Essex, that is criminal have you told you MP, it’s election year, tell them you will tell the papers, they don’t like bad publicity about the health service.
My husband was 48 when he lost his job with AS we have two children about the same age as you and your sister.

Anne

 

[Michelle-A]

Hi Anne,

Thankyou for your response. My sister and I have gone down every route possible, but unfortunately there are just no care homes for younger people with dementia. Manchester was one of two and seemed the better option because my mums family live there, it was where she grew up.
Anyway, regarding the MP, we have approached him and things always get passed on and we ended up being passed on to someone we'd already been in touch with. I just find it shocking that this country does not recognise the need for care homes for younger people. All care homes are for the elderly and we refused that our mum be put somewhere where people are 30 years older than her. We both feel very let down by the whole system. My mum has worked hard her whole life to bring my sister and I up on her own and now that's she sick and needs help, well, there just isn't the right care out there for her

 

[Anne54]

Dear Michelle

My husband goes to an old peoples home for respite but they put him in the rehab part because the people in there tend to be younger and fitter, he moans every time about it being an old peoples home, I have a plan, when I win the lottery I’m going to build a home for young people.

Anne

 

[Colin Cosgrove]

Dear Michelle,

I'm so sorry to hear about the troubles you're having with your mum. Alzheimer's is a difficult disease to manage on its own, but in combination with Parkinson's, it is so much more challenging.

It's terrible that you had to place your mum in a home so far from you and your sister. There are specialist homes for younger people with dementia nearer to that - off the top of my head, there's one in Milton Keynes, another somewhere in Kents, and one just opened near Southampton. If you would like me to send you details of these, please let me know.

If your mum does have Parkinson's disease, I wonder is she getting proper medical treatment for it? There is a lot of good medication available for Parkinson's, and while some of it is inappropriate for people with dementia, most of the others should be fine. Medicating for Parkinson's is a very delicate balancing act, and the deterioration you're seeing could have a lot to do with the Parkinson's symptoms.

I hope you find good support from this group. You are definitely not alone.

Let me know if I can be of any help,

Colin.

 

[Michelle-A]

Dear Collin,

My sister and I have been to see the home you mentioned in Milton Keynes, and unfortunately it was more like a mental institution and were very let down. We were also told of one in Cambridge which we visited and they recently reviewed my mum and we were told that they wouldn't accept her because of the trauma of moving her and also the costs of caring for her. Unfortunately it all seems to boil down to money and the authorites will not move my mum somewhere more expensive.

Because of my mums deterioration of health, we have now had to accept that we cannot move my mum because she is just too ill now. We have been fighting for so long now that I think we are only just realising that we have to accept that mum is only going to get worse.
I just wish we had enjoyed more time with her when she wasn't this ill.

With regards to the parkinson's, mum is seeing a parkinson's nurse and is under a professor of Neurology. It is very difficult to get the balance right with her medication for AD and Parkinson's. I just don't know what else we can do or what to expect next. My mum is weak and I wonder how much longer can she go on like this?

Michelle

 

[mandy]

care homes

Hi ive just read your messages about care homes.

We are in a situation at the moment where we need to look for a suitable care home for mum.

Just like you my mum has early onset alzheimers and we are finding it so difficult to find anywhere suitable. Isnt it disgusting.

Most of the care homes we have seen have elderly people all in there 80's or 90's who sit around all day or walk around like zombies.

My mum is full of energy and wants to be up and about doing activities.

They say they have bingo and quizes! Unbelievable - i dont know about your mum, but i know my mum hasnt a clue how to check a bingo ticket now.

At the moment mum is in a psychiatric hospital due to her having delusions and becoming agressive and the care in there is brilliant, but unfortunately she can only stay there while being assessed. Surely there should be proper care homes for younger people where they can get the support they so disperately need.

My heart goes out to you because i know how distressing it is to have to make the decision to find a home for your mum and all the hassle that comes with it.

 

[Michelle-A]

Care homes

Dear Mandy,

It's so refreshing to hear someone else say the exact same thing regarding care homes.

Ever since we realised mum needed specialist care we had this "idea" in our head of what it would be like and how we'd look round them all until we found one suitable for my mum.

Unfortunately, it ended up that we had little choice at all and like you say, were full of old people in their 90's. The care home mum is in is better than most, but hardly what we hoped for and like you said, bingo and board games are hardly what we had in mind for my mum who was once so full of life.

When my mum went into the home we made it clear she needed to be out as much as possible and likes to go shopping and get her hair/nails done.

Unfortunately, it's too late for all that for my mum now and I do wonder if her deterioration is partly due to lack of motivation, exercise etc.
It's so sad that the need for homes for younger people is just not recognised!

regards,
Michelle.

 

[Vik]

Hi Michelle

I identify with you so much! I am 28 and my sister is 26. Our dad was diaognosed with early onset dementia when he was 56, although he had started showing symptoms in his late forties. My mum is 55 now.

Mum looked after Dad on a day-to-day basis, so in that regard, I am different to you and more fortunate I guess. However, mum found things very hard indeed and my sister and I were very much involved in caring for dad. It completely took over our lives. I also dealt with all financial and legal matters as mum couldn't manage this at all. So, when dad needed more help than we could give, it was my sister and I who did the horrendous job of looking at care homes. It is the most disgusting state of affairs. Social services kept helpfully suggesting we looked at homes that smelt of boiled sprouts (why is that?) and catered for people 20 years older than dad. Everytime I vistsed one, I left with a wrenching feeling in my stomach and feeling very sick indeed. Then I found the specialist home in Manchester - Moston Grange - that's where my dad ended up going. (I wonder if that's where your mum is? It is really bad that you couldn't find a good home nearer - but not a surprise to me at all unfortunately) I was laughed at by social services when I said I wanted dad to go there, they said there was no way we'd get funding. Well, perhaps they just never met anyone as determined as me before?! Anyway, on the 4th attempt at getting funding, we got it and dad was transferred there in May last year. They were fantastic with him, absolutely wonderful. The staff treated him like a 50 year old human being - how refreshing!

Unfortunately, dad couldn't manage his asthma inhalers by this stage as he had deteriorated so much. His frequent asthma attacks became a problem and weakened his heart. Our dad, who was always so fit and healthy, died from a massive heart attack in July, at the home.

We are now trying to pick up the pieces of the last 5 years. It isn't easy. Your life gets consumed by Dementia, doesn't it? Somedays, I literally can't believe what has happened and I wonder where my twenties have gone. I often look at my friends, who have been partying so much and enjoying life and I am green with envy. That's not to say I regret a day of helping my dad - I would do exactly the same if I did it again - but I can't help but wonder, why us?

We also battled with my sister's ill health (she had cancer last year), and lots of other illness and sadness in the family. Life can be cruel.

All I can say, is do what you can do, but be easy on yourself. Don't expect miracles, and let yourself have off-days. LIke other people have said, you are only human! Most people would have given up a long time ago. I also felt so guilty when dad went into a home, as I thought it was something that I would never do. But, at the end of the day, I think it was best for dad. He got the care he needed and he got the best of us. He would have understood, I am sure. Just try to enjoy the time you do spend with your mum - better to have 10 minutes real quality time than 3 days of you being so tired you can't even focus, let alone enjoy quality time! I know that now, when I look back, I can safely say that I did everything I realistically could. And even in my darkest hours, I take some comfort from that.

Look after yourself and, now you found this website, keep talking. Talking really helps, I find, especially with people who understand!

Vik

 

[Michelle-A]

For Vik!

Dear Vik,

Thankyou so much for your message. I am really touched that you have taken the time to reply to tell me your story and your understanding of my situation.

Firstly, I am really sorry for your loss. I got very emotional reading your post.

It is Moston Grange that my mum has moved into. I am so glad of your message because ever since my mum has moved there we have had problems but I think a big part of the problems have been that my sister and I haven't been able to completely let go and allow these people to look after my mum, because after all, she's our mum and we have high standards. There have been numerous problems that we've encountered, but I think we are overcoming them now. Though things are still far from perfect! We visited the home recently and had a meeting with various different people and hopefully things will change. They have admitted that they've got things wrong. I think the main thing is that both my sister and I have finally realised and accepted that actually mum does need to be there and it's time for us to let go and try to move forward with our own lives.

It is so nice to hear you say good things about Moston because to some extent, we have blamed them for my mum's deterioration. Thinking that ever since she's gone into care she's got worse and it's because of lack of stimulation etc. So, it really does comfort me to know you had positive views of the home and the carers
Thankyou.
Michelle.