Parent with dementia

Ba_barbaraAnne

Hoping for some advice on how to cope with current situation.

My father came to live with me and my three kids a few months ago. Since then he has developed dementia and I am exhausted from being up nights with him, as well as looking after him and my children during the day. I can't even leave him alone in the house for a short time as he gets very upset or does something daft.

I'm doing my best to get home help from the health board - they have awarded me 2 hours twice a week but haven't actually got a person to do the job. I'm also booking my dad into respite care as soon as possible to get a break.

Meanwhile, I'm operating well under par - my friends are doing everything to help, such as bringing in shopping if i haven't been able to get out, taking the children to activities for me, and one friend comes in a couple of times a week to help me with housework/ironing or just to let me get out on my own.

The next step is to try and persuade the GP to have dad admitted for assessment by a geriatrician in the local hospital and i'm hoping to find someone who will come in as a private care assistant and to do overnights or even 'granddad sit' as it's not fair to ask my 15 year old to be responsible for his granddad while I have a night out. Dad can get aggressive these days if he is confused.

Does anyone know of an agency that supplies private home care assistants in the West of Ireland?

I know that i'm not alone in caring for an elderly relative, but being a single parent at the same time is just too much and it is really getting me down but i would feel guilty if I just put him into a Home without trying everything possible to keep him with us.

BTW - I do have two sisters but they do not live in Ireland and are not in a position to be of any help at the moment.

Thanks

Nevyn

You need to get in touch with his GP and get the name of the socail worker in your local health board whos area is the old people.
Each health board has one and it is thier job to work and put you in contact with all the help and support services you need.

gubby

I have been there too!! I know how you feel. its been a good few years now since my mother was living with us. even thought i have a husband, he was working away at the time. It was very hard. I think one of the hardes things for me was this "role reversal" where I had to be the parent, and she was the child. There were days when i just went outside the back door and literally pulled my hair and cried.
I know that not a help. But when he has gone you will be glad that you did everything you could for him.
Good luck.

koneko

She said:

Ba_barbaraAnne wrote:

BTW - I do have two sisters but they do not live in Ireland and are not in a position to be of any help at the moment.

The only thing I could think of aswell is to speak to his GP in particular, to see what he/she advises. It must be tough coping with everything, best of luck and i hope everything works out for you, and hang in there.

Ba_barbaraAnne

Thanks everyone for your support. Been on the phone most of today - doctor, public health nurse, Alzheimer's association, private nursing home, health board - nothing concrete yet but more wheels set in motion, and dad is on waiting lists for respite care.

Totally wrecked at this stage and just hope and pray that help comes soon before I crack up! Beginning to feel that my best will not be good enough, but maybe with a little help it will get better.

As regards sisters - one is in Germany and cannot leave her business at the moment, but as has planned to take over sometime in the summer and also to have me and the kids over for a holiday. The other doesn't even feel 'up to' seeing dad in this state and has said bluntly that even if she does come over from England she would not stay with dad if i wasn't here! Takes all sorts....

So much for 'Care in the Community'!

Saintly

Hi Barbara Anne,

I'm a social worker - I strongly advised that you push the GP to get an apt with a geriatrician as soon as possible, a private appointment on an outpatient basis would be a start. This will give you a clear diagnosis of your father's condition and expected deterioration or any other difficulties (expect a whole battery of tests) that you may be facing.

It sounds as though you are following up all relevant supports to maintain your dad at home. Community supports in this country are practically nil so rather than holding out hope for extra service, have a think about ways to maximise supports out there - are there local day centres? Could some of your father's pension be used to subside private care? Make sure you use the home help time to take a 2 hour break for yourself.

I would also recommend that you consider listing your father for a public nursing home at this stage. Every elderly person over 65 on a medical card is entitled to a public bed.. in theory... in practice, public waiting lists are notoriously lengthy and it is not unusual to wait for more than 2 years for a placement (I'm basing this experience on Dublin waiting lists) for particular homes. That said, the sooner someone's name is put on the list the better, so if you know of local places that he may like (lots of elderly people prefer religious run organisations), pop his name on the list. You're not committing to anything so there's absolutely no need to stress or feel guilty.

The most important thing is that a) your father is safe and well cared for, b) your time with him is quality time as opposed to 'stressed out, how long can I do this for' time.

The Carer's Association also have a web site and offer support, it may help to talk to others in a similiar position.

Hope some of this helps,
Saintly.

Ba_barbaraAnne

Hi Saintly

HAve been too busy to check this thread!

Am feeling that 'stressed out, how long can I do this for' way now. I've got a lot of work on at the moment, and even though I work from home, have had to get other people to take some of my workload as dad isn't able to let me work in peace. He has lost interest in doing anything to interest himself... no tv, no newspaper, won't go walking most days, etc. He now amuses himself for hours at a time with an invented 'activity' - opening and closing his trouser belt! Record is 2 hours 15 minutes. Says these things have to be checked, but if I try to distract him and get him to eat, or whatever, I get the head bitten off me.. so we just keep an eye on him and leave him to it now. thankfully he only removes the trousers occasionally. He has also wandered on us a couple of times - going to lectures in college, and to the pub at 8 am (he is a non-drinker and never goes to a pub!). Tried to get me up in the middle of the night once to take him to mass as well.

I'm still waiting for the Health Board to get someone to do the four hours a week, but the Alzheimer's association found me a lady to do a few hours privately. It's something, but not enough. There is only one day when she can come that it suits me to go out when she's there and I use it to go to the bank etc and meet up with my eldest son after school and we have a coffee and go shopping together - knowing that for once the dinner will be prepared, the house clean and dad will have had a walk when i get in. The friend who had been helping me out has been ill and not available - so it's all down to me really now.

Support is virtually non-existant. The day-care centre in the nearest town is full. The next nearest is 17 miles away in the county town.

I am getting a lot of support from the Alzheimer's assoc. They ring me regularly and have dad's name on the respite waiting list. They have a new day centre (again 17 miles away) but are waiting for the geriatrician's report. Dad's appointment with him is April 10th.

My dad's house in Dublin has been sold, and for about six weeks now, we have known that the closing of the sale is the week before Easter. The public health nurse said she would arrange respite care in the public home for dad, so I could (a) do his business for him and (b) get a much needed break for myself and the boys. Checked this twice with her in the last 10 days and was told it was sorted - just had to ring the ward and confirm. Did this last Monday and was delighted when the staff nurse told me that they would keep him a fortnight and I could take him out for Easter and all! As it coincided with the geriatrician's appointment, and he and the geriatric psychologist work in the home, it all seemed to be working out fine. Told dad he was going to the 'hospital' for his medical assessment while I went to Dublin for him. All happy, boys madly excited to have the break coming up etc. Then on Friday at 3.30pm......

Sister of ward in the home rings me to say that there was no bed for dad, I should not have been told there was one, and worst of all, because it was an 'open' ward, they couldn't be responsible for him if he wandered!!!!! I pointed out that they were supposed to be a ward specially for people like my father, and that if they didn't take him, where would he go while I was away? I ended up in floods of tears - my HOly Grail had been snatched away - and she finally said that she would get onto the 'care team' and get back to me. No hope of getting the Public Health Nurse on a Friday afternoon, gp was gone away till Monday, so calmed down a bit and decided to try to forget about the problem til then.

As if things couldn't get any worse - at 1.10am Saturday, heard noise in the kitchen so got out of bed to see if dad was hurt and found the kitchen on fire!!! Got Dad and the youngest kid out of bed and to the front door (other kids away t.g.) Couldn't get an answer from 999 so put fire out myself and everything was ok. Cups of tea all round and had my charges back in bed and asleep by 3am. Of course, reaction set in when I woke after a couple of hours sleep so was not in form for the phone call I received in the morning......

... the nursing home again. A different nurse this time, ringing to explain (again) why they definitely weren't taking dad as planned. This was just too much for me..... told her to stop telling me this stuff. I would be on to the phn and gp on monday. She kept at it, so told her that the Health Board were responsible and that next friday, they would have an 88 year old with nobody to take care of him as I wouldn't be here. She tried again, so the poor woman got me in full roar - told her my house had nearly burnt down a few hours before, i had saved my dad's life and now was NOT a good time to be hassling me about his care,......and then I hung up.

One thing that really struck me later on was that Dad needed to be away from the house while the clear-up took place (there was not too much damage), and that there was nobody I could ring and say 'could you take dad for a couple of days while I get this sorted and stop suffering from shock and be in shape to mind him'. A neighbour kindly took him to her house for a few hours and gave him a dinner on Saturday as I was in no state to function,bit it really is all down to me and I just can't do this without proper support - no matter how much I want to!

There is no problem with helping pay for full-time nursing home care - or even to pay someone to come in every day for a few hours. It is NOW i need support... not in two years (if that is the waiting list time here). Dad is happy enough most of the time (as long as he is engrossed in his trousers anyway lol!), but the children are suffering, especially the eldest, and I'm rapidly sliding down a precipice! I'm not sleeping or eating properly, can't think straight much of the time and am trying my best to hold us all together. This week wasn't a straw breaking the camel's back... it was a bloody haystack.

On the plus side - we are all alive; nothing was damaged in the fire that can't be replaced and paid for by the insurance, and if I have to.... will deliver Dad to the Nursing Home as arranged originally and drive off.... (joke..sort of).

I guess I'll spend the morning on the phone.... hopefully things will work out

LegacyUser

check out www.alzheimer.ie