Hi

New to Carers Connect
1

My mum’s memory is going, she is panicking about all kinds of things, can’t sleep, is occasionally saying rather odd and curious things. I’m stressed and have been very stressed with it all. Like everyone else, I have other plans in life, including being married to a beautiful woman, and like some peace and freedom to do as I want. Peace evades me at this time.

I’m just an ordinary bloke from the NW of England. Is that OK?

Any advice or help for someone reluctantly dealing with a parent who is very likely entering the onset of dementia, with all the grief, pain, anger, sadness and deep resentment around it all, will be gratefully received.

I might as well put everything here. I’m struggling to get help, waiting for the phlebotomy team to get bloods and the geriatric psychiatrist to visit, as my mum is housebound, struggling to wade through all the advice on all kinds of help, social, financial and anything else because I am stressed. Is there anything I need to think about, anything that might ease some of the stress and/or anything else. I’ve been quite ill with stress and I’ve been verbally lashing out at my mum, but getting some focus on that now. Also feel like weeping often, and upset at hurting my mum when I have lost my temper, only verbally I may add.

Any help or advice, particularly from people who’ve gone or are going through the same things, gratefully received. I can’t promise to reply to all or any replies as my life is chaotic at the moment.

PS. It’s not all bad, my mum is still ok, we have a nice house and three gardens, I have a beautiful wife and a strong faith, amongst many other things. It helps to be grateful for the good things we have or have had, even in the sh*tt**st of situations, quite frankly.

God bless us all.

2

Hello Tim i am a carer for my 86 year old mother who
has had dementia for over 10 years

i would say i know what its like and can be very stressful and i have allso broken down
and cryed many times and it is very hard to deal with
but there is a lot of orgarnizations who can support and help you
such as social services for a start and if your mother does
have dementia dementia uk are very helpful.

I hope i have been of some help to you Tim
kind regards martin .

3

Hi Tim,

Welcome to the forum.

Top priority should now be getting a diagnosis from a specialist so you can make proper plans for the future, for the sake of everyone concerned, mum, you and your partner.

How old is mum? What is making her housebound? That should be no barrier to GP care.

4

Hi Tim

This may sound a bit random…

Check for urinary infections…

one of the issues

in older people, changes in behaviour such as severe confusion or agitation

This can be missed that does mean to say there isn’t a memory issue.

5

Hi Tim

One step at a time is all you can do. It is really hard. Scary for you and scary for her. My Mum was diagnosed with Alzheimer’s 2 years ago and to say it was stressful was an understatement.

Just take one stage at a time. Get those bloods taken. There are MANY things that can cause dementia like symptoms, such as infection. Rule out other causes and only then worry about the next step.

Diagnosis has been good for us. Whilst my Mum has found it hard to come to terms with, which makes me feel guilty we made her have the test. On balance I think it was good to find out. My Mum is on meds which may or may not stabalise the condition. She certainly hasn’t really got much worse in the last couple of years. We have strong routines in place that help her remember what is happening weach day. We have also forced her to have some help in, which she didn’t like, but has got used to over time and I think without this my sister and I would have been on our knees. Also knowing what is wrong makes me less irritable with her.

It is heartbreaking, but not all doom and gloom. We still have nice times, and important to make the most of them knowing they might be limited. I have also come to terms with it now. I defintiely went through a period of intense grief, but that has setttled and we have a “new normal”. Really hope you can find some peace too.

6

Hi Tim
My husband was diagnosed with vascular dementia, after having many Tia’s and then a stroke. My family and myself went through traumatic times, wondering what on earth was wrong, ( before diagnosis). Hoped it was anything but dementia, but deep down we all had deep suspicions. In a way, it was a relief to be officially told. At least could prepare as much as could be. Trying, heartbreaking times, fighting his corner when needed in the nursing home. Many good visits too. We got through, because we had to, as he was a very much loved husband, dad, and grandad. He loved us too. Surprising, what love helps you to cope with, even though he wasn’t the man he once was.
He passed away on the 11th May, after probably 5years of decline. Much missed, never far from our minds, but he is at much deserved peace now.
Strength, love and faith in whatever form gets you through.
Thinking of you

7

Hi Tim
My mum (officially step mum, but after 40+ years has earned the full title :smiley: ) is now 96. She was diagnosed with vascular dementia about 5 years ago and we were worried how we would cope.
To cut a long story short, she asked us to find a nice Home for her, which we did and have been grateful for ever since. She is now so far deteriorated that it take a whole team to look after her. Even with the Home providing food, shelter, safety and personal care, she is on the phone to SIL several times a day (she started calling all of us but has now forgotten how to dial anyone else) She now doesnt recognise various of the family, including my husband and her middle son. She has no idea where she is, keeps asking to go home but cannot describe home or give an address. She panics at the slightest thing and is a shadow of her former indomitable self.

Seeing her decline, and reading threads on here for over 3 and a half years now, clearly shows me that caring for anyone with dementia cannot be done by just one person. It becomes a 24/7/365 job and a solo carer just burns out with exhaustion and stress, no matter how strong their love and faith.

You need help, whether that’s help for you to free you for caring or help for her, whether its other family or paid help is up to you, but practical help is needed and non-negotiable
Concentrate on her NEEDS not her WANTS and pay some attention to your needs too.

Hope this helps a little
Kr
MrsA

8

Thanks for all the replies.

After nearly a month of quite stressful situations, my mum is getting placed in respite for a month and then we are pushing for permanent residential care. I am not coping, capable nor quite frankly want to look after someone where I literally don’t know what might happen in the next five minutes.

We now get nurses visiting 4 times a day, which helps incredibly so.

I have a massive ball of stress in my stomach, and have to bury feelings of sadness and grief. But, to be completely honest, I would have no life looking after my mum when she could be looked after by professionals who know what they are doing, Equally, it would just be postponing the inevitable. In this situation, there’s no room for self appointed martyrs or heroes, I needed all the help I can get. Quite frankly, with me and my mum, it has become a battle of wills, whatever I choose to do or not do is going to be stressful and descend into tense standoffs. What’s the point? I love the bones of her, but she’s not really the mum I knew anymore, but occasionally is sweet and lucid. More often just not interested in anything anymore.

So, I feel we are all going forward to the advantage of all.

9

Sorry to hear that Tim. I’m glad that you have some respite. There comes a point with dementia where the care is too much for one person. Sad as that is. Sending strength to get through this time. xx