Hi I'm new to this

[Simmo]

Hi everyone

I'm a new member who has joined recently. A bit about why I've joined....

Mum has vascular dementia which was diagnosed in October last year, although she had been showing symptons for about 18 months before the diagnosis. It started off as little things like forgetting conversations we'd had and has got progressively worse at quite a speed. I forgot to mention she's 81 years old. Mum also suffers with arthritis, diabetes, high blood pressure and high cholesterol and is on numerous tablets for her many ailments.

Dad looks after mum at home, he cooks, cleans and generally makes sure she's loved and cared for. Unfortunately last week mum had a fall in the house and cut her head open, Dad called me at work in a state of panic so I rushed round. I accompanied mum to the hospital where they 'glued' her head and she was allowed to go home the same day. Since the fall we've made sure that she's not left alone but I think it's all starting to take its toll on my poor dad. Mum gets very depressed and cries a lot at all times of the day, she keeps asking us to take her home, and as much as we try to convince her that she's lived in the same house for over 40 years she still won't believe us. She also asks when my nan (who died 38 years ago) is coming for her and her latest thing is saying that she's not married to my dad which is really heart-wrenching. We both realise that it's the dementia and not mum talking but we're finding it really hard and don't know how to try to comfort her as there's no reasoning with her. I realise this is common with dementia and think that we'd be able to accept it more if we weren't emotionally involved.

I'm an only child and try to do as much as I can to help them out. I call round and dress mum before I go to work (after I've convinced her to get out of bed) then pop in again after work to see them. I've recently started doing their laundry and getting the shopping in for them and I also sit with mum on a Wednesday evening so that dad can go for a pint and get a break from it all. I'm married with a 9 year old daughter and also work full time. I wish I didn't have the feelings total helplessness that I have at the moment. I try to keep as upbeat as I can for my husband and daughter as it isn't fair on them for me to keep being 'stressed' but they're just as concerned for my parents wellbeing.

I phoned social services at the beginning of the week and asked for mum to have an assessment. I suppose the help we'd be looking for is someone to come in and help get mum sorted in the morning and then sit with her for a couple of hours in the week to enable dad to go and pay the bills and collect pension etc. We want to keep mum at home for as long as we possibly can and just hope that we're able to get some support from social services, but I think this will probably be a long, drawn-out process as I don't think mum's considered a priority as she's already being cared for at the moment by dad.

Sorry if I've rambled on a bit, but glad I'm able to communicate with others who 'know where I'm coming from'.

Thanks for reading this.

Simmo

 

[Skye]

Hi Simmo, welcome to TP.

It does sound as if your dad needs some help in craing for your mum.

I hope you stressed when you rang that you needed an urgent assessment. And also that you want a carers' assessment for your dad. Social Services are not inclined to offer this, but it is every carer's right.

If you haven't done this, you should ring again on Monday morning and stress how urgent it is, and that you are worried about your dad's health. They should come fairly quickly then.

When they do come, it's important to give the worst possible scenario, tell them everything that your dad needs help with -- try to work this out in advance, so that your dad knows what to ask for. He may not get it all, but it does no harm to ask.

It really shouldn't take long to get help, if you stress the drain on your dad's health.

Good luck, and let us know how it goes.

 

[ChrisH]

Hi Simmo
Welcome to TP. I only joined a week or so ago but have found it brilliant. There are so many lovely people who take the time to give advice or just kind words despite going through some horrendous experiences themselves.

I'm sorry to hear about your mum. We share some common situations so I can empathise with you a bit. I too am an only child but sadly my dad isn't around to help mum as he died 15 years ago. In some ways this is just as well as I know he wouldn't be able to cope with her and would have got rather impatient I think. I also work full time and have a family (nearly 15 and 17). Unfortunately I also live a long way from mum so that's where we differ.

It amazes me that there seems to be such a diversity in the level of support available in different parts of the country. My mum is in Worcestershire and the care there has been amazing. Has your mum had any visits from social services (occupational therapist, support worker or anything like that) since she was diagnosed? The OT visited my mum with a social worker even before she'd seen the psychiatrist and been given a diagnosis (turned out to be mixed dementia) - and I didn't even request it. Since then the OT or a support worker has been in every week. They started just by building rapport and mum thinks they are lovely. They are gently suggesting that she has someone in every day in the evening just to make sure she's taken her 1 and only pill and to see if she needs anything. They've mentioned the possibility of a day centre (mum wasn't interested) and of a group they want to start when there are enough people they think will benefit which will be a 6 week course on ways of helping them remember. They also arranged for her to have an alarm wrist band and have various sensors fitted. However, I'm wondering if all this help would be there if I lived closer.

I really hope social services come through for you, and if they don't just keep on at them. Perhaps if you know what help others are getting in other areas it might give you a bit of ammunition to ask why you can't have the same support where you are. If they don't want to play ball, have you contacted your nearest Alz.soc. branch or Age Concern? They might be able to find someone willing to sit with your mum so your dad can get out and that will also give you a bit of breathing space too.

One piece of advice that I have seen given elsewhere several times is that you have to take care of yourself as well, and so does your dad. You both sound like you're doing a wonderful job so far, but you're not superhuman and from what I've read on TP it sounds like you (as well as me) could be in for a long haul. It's the nature of this awful disease. The thing that helps me is humour and I try to find something amusing in all the quirky things mum gets up to. That and talking to TP - and I'd better apologise now for all my ramblings - I do tend to produce some rather long posts!

My best wishes to you all
Chris

 

[Simmo]

Thank you very much to Hazel and Chris for taking the time to reply, I'll certainly take on board your comments when we meet with social services.

I think I'm going to let them believe that dad is mum's sole carer and take myself out of the equation, let them believe that it's dad who does everything and that I'm unable to help as much as I'd like to due to work/family commitments.

I forgot to mention that we're waiting for an appointment to come through for mum at the memory clinic. I took mum to the doctor a couple of weeks ago as I was concerned that the anti-depressants she was taking weren't doing their job. The doctor could see how much mum had deteriorated since her last appointment and suggested that the memory clinic would be able to offer dad and myself the help and support that we need. We both realise that there's no cure for mum's condition but we could do with a steer on how to deal with the problems... what to say to her when she's convinced there are men with dogs in the house etc. although I'm not sure that there is an answer to this problem.

Saturday was a particularly bad day for mum in terms of her crying, yesterday wasn't so bad, it's not knowing how she's going to be from one day to the next that's the problem.

One moment made me smile that I will share. Mum woke dad up at 5am on Sunday morning claiming that she needed to go to the toilet, dad went to her side of the bed to help her out and mum asked what he was doing. Dad said that she'd told him she needed the toilet, mum then said, "oh I don't need it, but I thought you might" and went back to sleep . I can imagine my dad cursing under his breath, but he did see the funny side later on.

Thanks for reading my ramblings.

Simmo

 

[Skye]

Hi Simmo

Good idea to keep yourself out of the equation, your dad really needs help, and if they think you provide it, they'll leave you to get on with it!

I think what the GP may have meant is that if the consultant thinks it appropriate, he may prescribe some medication to control the hallucinations. These drugs are not normally prescribed by a GP.

But as for help with caring, that's down to SS. I doubt if the memory clinic will be able to offer practical help, apart from perhaps support group meetings.

Glad you've managed to keep your sense of humour, anyway.