Dementia

Paulyh

I did search and there doesnt seem to be any recent posts...........

Just wondering if anyone has any relations/ close family members who suffer from Dementia.
My Father has this illness for about 5-6 years now, although he is only 60 he needs 24 hour care. He lives at home with my mother, myself and my sisters all chip in to help out as much as possible.
not sure what i'm looking for here, just looking to see if anyone is in the same situation really, as people without first hand experience cant understand what its like on a daily basis.
and maybe exchange hints and tips to make the little day to day things easlier to manage.

sam34

Paulyh wrote: »

I did search and there doesnt seem to be any recent posts...........

Just wondering if anyone has any relations/ close family members who suffer from Dementia.
My Father has this illness for about 5-6 years now, although he is only 60 he needs 24 hour care. He lives at home with my mother, myself and my sisters all chip in to help out as much as possible.
not sure what i'm looking for here, just looking to see if anyone is in the same situation really, as people without first hand experience cant understand what its like on a daily basis.
and maybe exchange hints and tips to make the little day to day things easlier to manage.

hi paul

i'm coming form the other side of the fence, i'm an old age psychiatrist.

what i would say to you is this: care for teh carers. you, your mother and sister need to look after yourselves. caring full time for someone with dementia is a very stressful thing, and can lead to depression and burnout.

take everything you can get in terms of state and other assistance - home help, home care assistants etc. tap into the national alzheimers society, they may be able to provide ye with some hours.

if there is aday care facility in your locality, get him in there.

ask your public health nurse about respite.

i *think* the respite grant is still available.

if he has agitation or paranoid ideas, speak to his gp, there may be suitable meds which would help.

i sympathise with you, i know from my daily work how hard it is.

look after yourselves.

RedNiamhy

Hi Paul and Sam,

My Mom has pre-senile dementia. She is only 56 and was diagnosed 2 years ago. It's heart breaking to see and the only way I can really cope with it is by ignoring it and remembering her how she was.

Dementia was once described to me as that your loved one has died and you are grieving for them. But not only have you lost your loved one, you are left with this person that looks like them but doesn't act like them to care for 24/7.

I feel so sorry for my Dad as her main care giver. This is not how they had planned to spend their retirement. Mom was a special needs teacher in a primary school and now has no patience or time for her own Grandson who she would have worshipped and really enjoyed spending time with had things been different.

itsnotmyname

hey guys ,
i gave up my job, to look after my da who had been sick for some time with various medical conditions. We found it difficult to accept the term dementia, when it was diagnosed , because he was such a character , and every now and then , the old soldier still appeared. I think u have to live the experience to fully understand it .........it aint easy, when u gotta live it on a day to day basis. I suppose u remember the person 4 who n what they were ......n keep that saying in ur head , once an adult and twice a child. It may seem difficult at times , but all u can do as a carer is your best !
best of luck .....

Paulyh

hey all,

i'm pretty much the same story, my dad was a guard until he retired early at 55 due to this illness. and it is something that i have never talked to anyone about, as in how it has affected me. as has been said, it is a if i have lost my Dad, and i almost feel cheated that i have never had a chance to have my Dad as a friend and not just as my 'dad'.
i was in a long term relationship around the time things got bad as a result of me not talking about it, and just being down all the time, and sometimes just sitting (when on my own) and crying that relationship ended as i seem to just push everyone away. As i have a great girlfriend now and we live together not too far from home, so i can run home for any emergencies,
things are good now, its just a part of ours lives and we have to get on with it. my sisters and i take my dad out when we can, and have him up to our houses for a break. and mind him to give my mum a break.
he is in day care 2-3 mornings a week but sometimes we get a call that he is freaking out and we have to come running!!

ok i could go on and on, and i dont like to saying that its nice to hear from people a similar situation, but i suppose maybe we could use here to tell our own stories, give advice or just somewhere to write down anything if things are getting on top of us or just have a good ol' rant to get things off your chest.

Paul

RedNiamhy

My Mom who I spoke about in a previous post has been getting worse over the past few months. My sister is finding it very hard and last week my Dad admitted for the first time that he's finding it tough. The Docs and my Dad are looking into respite care for my Mam. Does anyone know much about this and its benefits? In particular, I think the place they are considering is in Ballindine.

Paulyh

hey Niamh,

thats similar to my Dad, he has gotten worse since december. and my mum has found very difficult lately. he seems to be getting more paranoid and having more hallucinations (describing water rising around him, and flowing down the walls) and also more frequent violent outbursts (he has never hit my mother, but smashing things and telling everone to fcuk off away from him), these last only a few minutes, and he has no recollection of them afterwards. i had been staying at night with my mum as she was afraid he would hurt himself.
anyway, he has been in respite daycare 3 days a week but his outbursts mean that this is not suitable for him anymore.
we got him into St. Patricks Hospital (Dublin) last week, so they can find a better mix of medication to calm him, without knocking him out, and also give my mum a break. he will be in there for 3-4 weeks.
and we will have to decide what options we have for when he gets out.
as far as i know we can get a carer in to the house, almost full time, to help out so that would probably be the ideal option.

where abouts are you located?? maybe i can point you in the right direction as to where you might get advice/ help.

Edit: sorry, i see you are in Perth, where is your mum located???

Olduvai

I would agree that its most important that carers are supported. From my previous experience family members can find challenging behaviour, the confusion, the loss of memory and where their mother/father doesnt recognise them very hard. It's also important to recognise the role reversal where the children are now the carers who are now attending to a range of personal care needs that can be anything from eating to drinking, to toileting, washing and dressing.

I think its important that both the person with dementia and their carers/ families are provided with various outlets. This would include respite and opportunities to meet with other persons who may be in similar situations.
Support groups allow persons in similar situations to get peer support, share information and experiences.

I dont know where you are living but I have heard good reports about the Alzheimers Society of Ireland. They provide a broad range of services for persons from day care, personal care to advocacy services and also carer support groups. Another is the carers association that may be of interest.

Remember

Its interesting to read other peoples stories, my own mother has dementia and is being cared for by my Dad, both are in their 80's and it is pretty tough. She is fine most of the time, doesnt eat or communicate very much but gets by with most daily tasks. However her main problem or should I say our main problem is her aggression. Every meal time she picks up a knife and bangs really really loudly on plates, the table, the sink or whatever she can. Its the most annoyingly loud noise and of course there is always the worry that she will actually harm someone with the knife. She is in the "system" but we dont really seem to be getting much help, she wont attend daycare and they wont allow anyone other than family into the house, the nurse wants her to see a psychologist but mum is refusing. Anyone have any ideas how to deal with her refusal to accept help???

neil_18_

My mam's mam has dementia, and today, thank god, she got a carer for the first time.
Just some of the things related to my nana's dementia, if anyone wants to see what other symptoms people are going through:

-No short-term memory
-Seeing people or things that aren't real. ( Example : A girl came in and ate some food and hid in the cupboard).
-Won't change her clothes, until she is forced. Gets too comfortable in clothes and doesnt like getting new ones.
-We have cut off her cooker after several instances, examples : Covering potatoes in Domestos( I kid you not) instead of oil, putting an electric kettle on the stove.
- She has kinda forgotten some grandchildren who don't visit her very often.
- She's not eating a lot
- And small things like losing the tv remote, her glasses, repeating things every few minutes.

Her distant memory is still quite good and she is always in great form though. We are lucky that we have a lot of family so at least 2 people go in on a daily basis.

If anyone has any questions about how to find a carer PM me. I'm only 18 but I've already experienced so much with dementia that if, god forbid, my own mother gets it, i'll be able to handle it.

neil_18_

Remember wrote: »

Its interesting to read other peoples stories, my own mother has dementia and is being cared for by my Dad, both are in their 80's and it is pretty tough. She is fine most of the time, doesnt eat or communicate very much but gets by with most daily tasks. However her main problem or should I say our main problem is her aggression. Every meal time she picks up a knife and bangs really really loudly on plates, the table, the sink or whatever she can. Its the most annoyingly loud noise and of course there is always the worry that she will actually harm someone with the knife. She is in the "system" but we dont really seem to be getting much help, she wont attend daycare and they wont allow anyone other than family into the house, the nurse wants her to see a psychologist but mum is refusing. Anyone have any ideas how to deal with her refusal to accept help???

My grandmother is exactly the same with nurses. What my mother does is goes over to her and says the doctor rang me and said there is a nurse on the way and she has to come in... She gets very annoyed to be honest, but once the nurses come up they are professional enough to deal with her, because they know what to do, they experience it all the time

RedNiamhy

Sorry for the delay in replying Paul.
I am working short term in Australia at the moment but my Mam is in the North West of Ireland.

I have "spoken" to her once since I came away but just she cried down the phone.

I talk to my Dad every 3 days or so and he just says she's "Not good". He's a man of few works and not one for simply chatting.

I suppose by being here I am shielded from a lot of it but feel guilty too that I am leaving everything to those at home. I know there are people that are saying that I should have stayed at home and I shouldn't have come away but if Mam was well she would have wanted me to have this experience. She would have loved hearing how much I enjoy it here, hearing all my stories, possibly even coming over for a visit. But I don't think she realises that I'm not there, she can't talk to me on the phone and she's not able for such a flight. It's heart breaking.

When i go home I am going to stay at home for 2 months and give me Dad a break. But I don't want to have to care for my Mam. I don't think anyone does, but that doesn't come into it. It it needs doing, it just has to be done. Our parents are supposed to mind us, not the other way around.

tweety11981

Hi Neil, if you could send me some info on getting a carer it would be great, thanks

neil_18_

tweety11981 wrote: »

Hi Neil, if you could send me some info on getting a carer it would be great, thanks

Hi tweety,

What you need to do is ring the Alzheimer Society of Ireland, or email them. What we did was asked them to assess my nana, then asked to be put on the waiting list for a carer. They will ask for a note from your doctor as proof that the person has dementia.

Its best to contact them soon because you will prob be waiting a while for a carer. Heres their details :

Phone : 1800 341 341

Email : helpline@alzheimer.ie

Website : http://www.alzheimer.ie/


Maybe the OP could edit his/her post to include these contact details for people in the future?

tweety11981

Thanks Neil. I rang them yesterday actually, someone will call out tomorrow to observe the situation. Thanks!

LegacyUser

I have a father who has dementia for the last 2 years. its extremly hard to see him like this, but you have to keep going and be positive. im from a large family and you would think that everyone would want to help out, but no i have members of my family who dont even visit my dad. all i can say hes a great man, worked so hard for all his family. my mam is super she looks after him at home, and "SOME" of the family help out too. its very very hard.
its even hard for me writing this.

LegacyUser

Paulyh wrote: »

I did search and there doesnt seem to be any recent posts...........

Just wondering if anyone has any relations/ close family members who suffer from Dementia.
My Father has this illness for about 5-6 years now, although he is only 60 he needs 24 hour care. He lives at home with my mother, myself and my sisters all chip in to help out as much as possible.
not sure what i'm looking for here, just looking to see if anyone is in the same situation really, as people without first hand experience cant understand what its like on a daily basis.
and maybe exchange hints and tips to make the little day to day things easlier to manage.

Hello. yes im in the same boat.My dad has it 2 years. were in the same boat.
I have a father who has dementia for the last 2 years. its extremly hard to see him like this, but you have to keep going and be positive. im from a large family and you would think that everyone would want to help out, but no i have members of my family who dont even visit my dad. all i can say hes a great man, worked so hard for all his family. my mam is super she looks after him at home, and "SOME" of the family help out too. its very very hard.

Paulyh

timmy2010 wrote: »

Hello. yes im in the same boat.My dad has it 2 years. were in the same boat.
I have a father who has dementia for the last 2 years. its extremly hard to see him like this, but you have to keep going and be positive. im from a large family and you would think that everyone would want to help out, but no i have members of my family who dont even visit my dad. all i can say hes a great man, worked so hard for all his family. my mam is super she looks after him at home, and "SOME" of the family help out too. its very very hard.

i am sorry to hear about that, it is very difficult. My Dad is now in St. Patricks Hospital, he is in nearly 3 months. and he will be there until he is 'stablized', as now where else can accomodate him yet.
We (mostly my mother) have cared for him for the past 7 years at home, and during this time we just kind of got on with it. the majority of our family (my uncles, aunts, etc.) didnt really know the full extent of how bad he was so were'nt really involved at all in helping much, as we never really asked for any help. it was only in the past few months when things got way too much for us to handle that everyone realised how bad he was.

Now everyone is helping brilliantly. Either myself, my sister or mother are in to see him every day and my relations also go in to see him and if cant get in to him, we can always count on someone being able to step in, and it makes a huge difference.

anyone who is not used to caring for someone, doesnt know the huge strain it is, and if there's is not much help, it is almost impossible to keep going.

I suppose what i am saying is maybe you can sit down and ask them to chip in, even if its just for an evening a week so you can get out, or just have some time to yourself to 'de-stress' if thats possible.

neil_18_

timmy2010 wrote: »

Hello. yes im in the same boat.My dad has it 2 years. were in the same boat.
I have a father who has dementia for the last 2 years. its extremly hard to see him like this, but you have to keep going and be positive. im from a large family and you would think that everyone would want to help out, but no i have members of my family who dont even visit my dad. all i can say hes a great man, worked so hard for all his family. my mam is super she looks after him at home, and "SOME" of the family help out too. its very very hard.

Same here. I know of very few families who dont have that problem tbh.

fridgeraider

The one thing I would say to anyone who has a loved one with dementia is to go get whatever help you can get. Be it from the Alzheimer's society, Carers Association, HSE. Whatever.

I'm writing this as someone who was a part-time carer. My dad was a full-time carer to my mum who is still alive. She's had Alzheimer's for many years and had to go into a home permanently last year because her condition's deteriorated so much.

Anyway, we got great help from the HSE in the form of helpers who would come out to the house in the morning and evening to get her in and out of bed. My mum also used to go into day care which gave my dad a few hours off to do his own thing. And finally, a godsend to many people, there was respite care.

Now respite care can be an emotive subject for some people who think they're somehow letting their loved one down by putting them away into a home for a week but it is in fact a godsend and a way for them to have a life for a week. It's only when your loved one goes into respite or (in the case of mu mum - into care permanently) that you realise how much your life had come to revolve around them. Talk to your local public health nurse/GP whoever and at least be on the list. If it doesn't work out you can always say no but don't rule it out.

fridgeraider

timmy2010 wrote: »

I have a father who has dementia for the last 2 years. its extremly hard to see him like this, but you have to keep going and be positive. im from a large family and you would think that everyone would want to help out, but no i have members of my family who dont even visit my dad. all i can say hes a great man, worked so hard for all his family. my mam is super she looks after him at home, and "SOME" of the family help out too. its very very hard.
its even hard for me writing this.

Yes, I know what you mean. In large families some people "hide" behind the numbers and won't lift a finger to help. The only way you can look at it is that you've done your bit for your father and that if they don't help, well that's their business. I gave up a lot of my life to help my mum who's got dementia and I don't regret it.

Remember

My mother has started to refuse to take her tablets, has anyone else had this problem? Any ideas on how to persuade her would be helpful. Or if anyone else has had this issue maybe they know what to do next? We can't force feed her the tablets but she does need them.......

Paulyh

Remember wrote: »

My mother has started to refuse to take her tablets, has anyone else had this problem? Any ideas on how to persuade her would be helpful. Or if anyone else has had this issue maybe they know what to do next? We can't force feed her the tablets but she does need them.......

I never had this problem to much, my dad usually took his, although we would find one or two on the floor sometimes. but that was just him dropping them and not realising.
Is it possible to crush the tablets?? if so, you can crush them between two spoons and add them to food, or a milkshake or a yogourt.
I know your mother might be on several tablets a day but this might help if you havent already tried it.

Remember

Thanks Paulyh,
I would try that but she doesn't eat at all so it would be impossible to be sure that she got all the medication. She only takes little bites here and there throughout the day. It amazes me that she still keeps going on the little amount of nutrition she gets each day.

Paulyh

Remember wrote: »

Thanks Paulyh,
I would try that but she doesn't eat at all so it would be impossible to be sure that she got all the medication. She only takes little bites here and there throughout the day. It amazes me that she still keeps going on the little amount of nutrition she gets each day.

is your mother able to eat on her own? do you have to help her?
I'm asking as my dad couldnt use a fork or spoon somethimes. he couldnt figure out how to. so we sometimes spoon fed him. would your mother be getting frustrated when trying to eat??

neil_18_

Remember wrote: »

Thanks Paulyh,
I would try that but she doesn't eat at all so it would be impossible to be sure that she got all the medication. She only takes little bites here and there throughout the day. It amazes me that she still keeps going on the little amount of nutrition she gets each day.

Same with us, she eats very little. We try but she refuses mostly. We have now got a woman who we pay to go in for an hour a day to give her her dinner, sort of as an authority figure, and its working better than before.

You could crush the tablets and put them in her tea. But she might taste them and not drink it.

Remember

Sorry I didn't get to reply to you and all your helpful comments. Every now and then I check in online to see if anyone else has the same issues! My latest issue is the bathing one.....Mum is refusing to have a bath or a shower. She is starting to get pretty smelly now and I really dont have a clue what to do. I have filled the bath for her and set out towels etc but she refuses to get in, then I have told her its time for a shower now mum cos its very hot and you need to freshen up, still she wont get in. Altho she never had a shower just a bath.

How on earth am I going to get her in? Every day she says she will have a bath later in the day but she never does. She is still alert enough not to be fooled into it, I dont want to upset her either but she really is stinky now.

I would force her into washing, or wash her myself if I thought it would help but i really am not sure, anyone else had this problem??

LucyBliss

Remember, could you fill a basin and wash her while she's sitting in a chair or before she gets dressed in the morning or undressed at night? We used to do that for my grandmother. She had a touch of geriatric dementia, coupled with extreme stubborness and a case of the "don't wanna's". Some days we'd have to sweet talk her into it but she'd agree that she felt better afterwards.

I also empatise with those experiencing problems with family members who don't help out. My mother and I cared for my grandmother at home and it severely curtailed our life, as it does. The family knew this, but even to get my mother to the cinema for her birthday, well you'd think I was asking them to fly to the moon. It was only a few hours I needed someone to sit with my grandmother, not a whole year! Though I should have realised when I had major surgery and they had to help out, but as soon as I was back on my feet, they stopped calling in. But what goes around comes around in my opinion.

LegacyUser

Remember wrote: »

Sorry I didn't get to reply to you and all your helpful comments. Every now and then I check in online to see if anyone else has the same issues! My latest issue is the bathing one.....Mum is refusing to have a bath or a shower. She is starting to get pretty smelly now and I really dont have a clue what to do. I have filled the bath for her and set out towels etc but she refuses to get in, then I have told her its time for a shower now mum cos its very hot and you need to freshen up, still she wont get in. Altho she never had a shower just a bath.

How on earth am I going to get her in? Every day she says she will have a bath later in the day but she never does. She is still alert enough not to be fooled into it, I dont want to upset her either but she really is stinky now.

I would force her into washing, or wash her myself if I thought it would help but i really am not sure, anyone else had this problem??

Hi. I had a very similar problem with my mum a few years ago, I didn't force the issue, what I did was to buy baby wipes, and used these to freshen her up when I was dressing her, I also found them very handy for using after she went to the toilet, I then used a deod stick for under her arms.

I might be wrong here and this is just my own experience, I didn't get worked up about her not taking a bath/shower at the time,to me it was the least of the problems imo, as long as she was eating and realativley happy in herself that was the main thing, while the wipes don't replace the shower, they are of some help.

This phase did past and while I can't give my mum a bath, I can now shower her every day and it is not a bother, when she finally went into the shower, the first week was a bit tricky, but she then got use to it, that was over two years ago and no problems since then.

LegacyUser

Remember wrote: »

My mother has started to refuse to take her tablets, has anyone else had this problem? Any ideas on how to persuade her would be helpful. Or if anyone else has had this issue maybe they know what to do next? We can't force feed her the tablets but she does need them.......

Again I had this problem, I bought a tablet divider from Boots, and cut the tablets into very small pieces, I then put them in a cheese sandwich or another very good method was a twix chocolate bare, I would cut the twix into several pieces, lift the chocolate part up gently and place the small bits of chocolate on the biscuit part and then replaced the chocolate part, worked very well for me.

Again I found this phase did pass and now I can give tablets normally with a drink.

LegacyUser

CORRECTION TO PREVIOUS POST

Again I had this problem, I bought a tablet divider from Boots, and cut the tablets into very small pieces and grind them down further if possible, I then put them in a cheese sandwich or another very good method was a twix chocolate bar, I would cut the twix into several pieces, lift the chocolate part up gently and place the small bits of tablets on the biscuit part and then replace the chocolate part, worked very well for me.

Again I found this phase did pass and now I can give tablets normally with a drink.

Flojo

My grandmother who I'm very close to was diagnosed with Dementia a few weeks ago. Thinking back all the signs were there over the last two years. She hasn't gone downhill rapidly though and I'm wondering if there is anything I could do to help keep it that way? I've never dealt with this before so hearing some ideas from people who have would be wonderful.

Taylorman

Does anyone know of an agency etc. that can supply carers? We need to get someone to live-in with my father who has Alzheimers. He lives with my mother who is elderly and finds looking after him difficult. They rest of the family help out a lot but we can't be there all the time. We would rather not go down the nursing home route as he is still very mobile but he does need full time care.

sam34

Taylorman wrote: »

Does anyone know of an agency etc. that can supply carers? We need to get someone to live-in with my father who has Alzheimers. He lives with my mother who is elderly and finds looking after him difficult. They rest of the family help out a lot but we can't be there all the time. We would rather not go down the nursing home route as he is still very mobile but he does need full time care.

hiya

ye have a number of options

have ye gone down teh route of home help etc from the hse? they are cutting down now on how much they allocate, but every little helps. ye might find that with this and family input, ye dont need 24/7 care.

there are a number of agencies that provide carers privately - home instead are one, i think they are a national agency. the alzheimers society of ireland also provide carers. maybe a combination of both agencies might suffice.
ask your public health nurse or gp fpr names of other agencies locally that provide this service.

lastly, i know a number of families that employ full time live in carers, this inevitably works out cheaper than getting carers by the hour from an agency. many of the carers are philippinos. i dont know how/where you would go about adverticing for this position - maybe teh public health nurse would be able to advise you about this.


hope this has helped a bit.

TylerIE

Flojo wrote: »

My grandmother who I'm very close to was diagnosed with Dementia a few weeks ago. Thinking back all the signs were there over the last two years. She hasn't gone downhill rapidly though and I'm wondering if there is anything I could do to help keep it that way? I've never dealt with this before so hearing some ideas from people who have would be wonderful.

Hi,

Slightly late reply but two general suggestions are

a) Your grandmother was probably prescribed medication (Ebixa or aricept most likely) for the actual Alzheimers. These can help slow down the progression if taken regularly, and particularly in the early stages.

b) Keeping the person with alzheimers mentally active is always advised. However this means in activities that they enjoy - e.g. watching films, walking, knitting, gardening, going to mass etc. If your grandmother never enjoyed bingo I wouldnt suddenly force her to go. Assisting and encouraging her with same is a great way to help her, and helps to keep your relationship alive.

c) Who is her primary carer, who spends the most time with her. If it aint you, sometimes the best way to look after the "patient" is to look after the carer. The carer may be getting tired or worn out, and this can perhaps lead to him/her being less able to look after your grandmother or perhaps even irritable or impatient with her. By looking after the carer you make sure that your grandmother is well look after.

d) Remember that the person with alzheimers isnt stupid. They might forget something, and theres no point trying to force them to remember. You will likely just agitate and upset them. Instead help them to overcome the forgetfulness by moving on and perhaps even sharing in it by saying "aw my mistake, im being silly" if you feel that your causing anxiety.


e) Contented Dementia from Easons, or from Amazon.co.uk (slightly cheaper and link is through a UK REG charity affiliate!). I cannot speak highly enough of this book. It helps you develop a coping mechanism and understanding of the illness that even those with years of experience may not yet have. Its by the author of "freakonomics".

I havnt time to do a huge reply right now, but may during the week. However feel free to PM me with any questions.

TylerIE

Taylorman wrote: »

Does anyone know of an agency etc. that can supply carers? We need to get someone to live-in with my father who has Alzheimers. He lives with my mother who is elderly and finds looking after him difficult. They rest of the family help out a lot but we can't be there all the time. We would rather not go down the nursing home route as he is still very mobile but he does need full time care.

Nurse on Call in Ranelagh offer a Recruitment Service. They provide staff to many of the main hospitals and nursing homes in Dublin on an agency basis, and any positions they have are advertised to their staff when payslips are sent out. Their phone lines are mad busy, but you should get through. +353 1 4965199

Servisource Healthcare also provide agency staff, and may be able to provide either a recruitment service or agency staff on a shift basis.

Your local HSE Public Health Nurse should be able to arrange limited care through the HSE. This however, in the current climate, is likely to be only for an hour or two a day. The HSE Info Line may be able to put you in contact with yours - 1850 24 1850

The Alzheimers Society do in some areas assist with providing carers. If not they likely have a support group somewhere nearby. Regardless of where you live there are often individuals who are well experienced in providing care who someone can recommend. In my area there are 4/5 ladies who had looked after family members, and upon their death started to do it for others and the nature of caring for the elderly being what it is, they often free up slots. If you find a local support group you may be able to get recommendations for an experienced carer in this situation who you could perhaps engage. Someone like this would be much cheaper than going through an agency, and may also be more flexible with working around your individual needs. Another option is (easier if you are in the country) to find a student nurse or student from a PLC Nursing Studies / Healthcare Assistant course. This is likely to be easier during the summer, but during the term time you can perhaps arrange weekend cover.

Many hospitals will allow you to place posters in or around the canteen area Make sure to get permission (often you need the poster stamped) else they will be ripped down. Ask at reception who you need to get permission of - Its likely to be the services manager. Similarly (during term time obviously) posters could be placed in the Nursing Building of your local university or near relevant classrooms in your local PLC college. Even contact the Students Union in the relevant colleges, as they often advertise jobs as a service to their students. Obviously im just a stranger on the internet, but once a student has some ward experience (most have gotton some by Mid February) they should have many of the basic skills needed.

Rather than 24/7 Care you may be able to arrange Day Care. Your local Alzheimers Society may be able to advise on local options. A good mix may be to avail of Community Day Care one or two days a week or as available, along with the HSE Carer each morning. Then on days where no day-care is available perhaps get the HSE carer in the morning and a private carer in the evening along with family visits on a rota basis.

Day Care may also give your father some stimulation and routine, and will give your mother some peace in the house to do as she wishes or to perhaps undertake chores or personal care without having your father on her arm or constantly interrupting.

Obviously I dont know how much assistance your father needs with his activities of daily living, but you do say he is mobile, so a number of smaller supports may be of use if you do want to avoid the nursing home route!

Flojo

lst wrote: »

Hi,

Slightly late reply but two general suggestions are

a) Your grandmother was probably prescribed medication (Ebixa or aricept most likely) for the actual Alzheimers. These can help slow down the progression if taken regularly, and particularly in the early stages.

b) Keeping the person with alzheimers mentally active is always advised. However this means in activities that they enjoy - e.g. watching films, walking, knitting, gardening, going to mass etc. If your grandmother never enjoyed bingo I wouldnt suddenly force her to go. Assisting and encouraging her with same is a great way to help her, and helps to keep your relationship alive.

c) Who is her primary carer, who spends the most time with her. If it aint you, sometimes the best way to look after the "patient" is to look after the carer. The carer may be getting tired or worn out, and this can perhaps lead to him/her being less able to look after your grandmother or perhaps even irritable or impatient with her. By looking after the carer you make sure that your grandmother is well look after.

d) Remember that the person with alzheimers isnt stupid. They might forget something, and theres no point trying to force them to remember. You will likely just agitate and upset them. Instead help them to overcome the forgetfulness by moving on and perhaps even sharing in it by saying "aw my mistake, im being silly" if you feel that your causing anxiety.


e) Contented Dementia from Easons, or from Amazon.co.uk (slightly cheaper and link is through a UK REG charity affiliate!). I cannot speak highly enough of this book. It helps you develop a coping mechanism and understanding of the illness that even those with years of experience may not yet have. Its by the author of "freakonomics".

I havnt time to do a huge reply right now, but may during the week. However feel free to PM me with any questions.

To me that is a huge reply! Thank you so much.

LegacyUser

lst wrote: »

d) Remember that the person with alzheimers isnt stupid. They might forget something, and theres no point trying to force them to remember. You will likely just agitate and upset them. Instead help them to overcome the forgetfulness by moving on and perhaps even sharing in it by saying "aw my mistake, im being silly" if you feel that your causing anxiety.


.

+1

Would also add the importance of being patient, the forgetfulness is really no big deal imo, as said above just move on from it quickly.

Their are so many different stages, some elements of which may not impact on the person, others may only last a short time.

I would advice not to leave the person alone, one stage that many people go through is wandering particularly if the closest person to them is not around all the time,they will be worried as to where they are, it may not happen straight away but it may happen at some stage. So just be prepared.

Don't treat the person any different from before, for instance if you behaved in a certain way humour wise with the person carry on doing so, particularly as things progress,that is what I'm doing anyway and it is working well for us, just because the person can't talk, does not mean that they are not fully aware of what you are saying, I strongly believe that.

Make sure your grandmother continues to watch her favourite tv shows/radio etc... as before even as the illness develops. Just have it switched on.

I would also say that the carer should find themselves a hobby that they can carry on doing indoors, for me it was the internet.

DO NOT TALK about the person as if they are not in the room when they are in the room, even if you think they can't understand. For example someone will come into the room and ask someone how she is, when she is actually in the room herself, try and avoid this imo.

Don't crowd the person, what I mean is if their are several people in the room and different conversations are going on at the same time, it can confuse the person.

If I think of anything more I will add on, any other questions please feel free to ask, I am not posting under my boards name, but if you would like to talk by PM, just say so in this thread and I will PM you under my boards name.

I find as a carer you have to make adjustments, but your grandmother is still your grandmother and she is still the same person as before and always will be even as the different stages develop :-)

TylerIE

+1 on Gingerbreads comments.

The multiple conversations thing can really agitate the individual. Talking about the person when they are there not only can upset the individual, but it can also seriously upset the primary caregiver.

I really cannot speak highly enough of that book. I read half it before I even left the shop. Being a scabby student I buy all my books online but I found it so good I couldnt wait for it to come so bought it in Easons. The day after I got it I tried a few of the simple techniques in it - literally experimenting - and was shocked at how great it worked. This is as someone who had spent 2 years working full time with people with dementia, some of the stuff I did already but this made it logical and gave true rationale.

Il also elaborate by PM if you wish but I think we would have an even better discussion after youd read the book!!!!

Ginger Bread id love if you'd PM me!

bubbaloo

Hi there. My sympathies go to anyone who is living through this at the moment. My dad has been in a nursing home since Feb as he has Alzheimers and we had the most horrendous 4 years up to that.
The names of all the agencies are great but the only thing I will say is that most of them can only offer very little time - an hour a week?
We ended up taking a hour or two from several different agencies and this actually made things more difficult. My dad was more confused than ever at the amount of different people coming in to the house, so I would advise you to try to keep it as routine as possible.
If you can be consistent it will work out better. Of course this will probably only happen by paying a private carer - such as Home Instead (who we found to be brilliant by the way!)
Best of luck to all.

oisindoyle

Gingerbread and 1st I would appreciate it if both of you could PM me ,,Im in a similar situation to many of the above and today I found it particularly difficult having just been to my Mums consultant.
thanks

LegacyUser

Something that has just come to mind that some may find useful who might be thinking of giving up work to look after someone. I was never informed of this by consultants etc... which is very disappointing and surprising imo, thankfully I worked for an excellent company with an excellent HR dept who obviously knew their employment law thankfully :-)

As far as I know this is still available.


Are you aware that by law you are entitled to a period of 104 weeks off work unpaid and that your employer must keep your job open for you. Although this is unpaid leave you may also be entitled to a carers allowance, this is not means tested, it is based on your prsi contributions, more information from link below.

http://www.citizensinformation.ie/categories/employment/employment-rights-and-conditions/leave-and-holidays/carers_leave_from_employment

LegacyUser

Something else to look out for:

If the person has any of the following symptoms, difficulty sleeping, quieter than usual, smelly urine, frequent toilet going(urine) they MAY have a urinary tract infection which can really throw the person.

My mum gets the above from time to time and it has always been a urinary tract infection (UTI). It is easily diagnosed. You need to bring up a urine sample to the doctor who will initially do a quick dip test, if it shows up positive he will prescribe an antibiotic immediately. He will then send the sample away for further testing to determine which antibiotic is the correct one to use as it can vary from uti to uti. As this can take up to a week, the GP should prescribe something straight away( in a way its a guessing game but because its so uncomfortable for the person they usually prescribe immediately)

Bit of practical advice if getting a urine sample can be difficult, I bought one of those sandwich boxes and just place it in the toilet bowl and then empty this into a small urine sample container which you can pick up in any pharmacy.


Another thing to watch out for and get advice on is constipation, again this can really have a negative impact on a persons mood who has dementia.

olaola

Just wondering if anyone knew of a dentist in the Dublin area that would deal with geriatric patients - esp those with dementia/Alzheimer's? My Mother (who has Alzheimer's) complains of a sore tooth, but I think when she is brought to the dentist, it's hard for him to actually get the information he needs from her to help treat the issue. If you get me!

My mother is also having the issues with bathing etc. She's terrified of slipping, which means she won't get into the shower or try to climb in and out of the bath.

garbanzo

Great thread folks. In the same boat with my Dad and the main lessons so far after two years of it are:

1. Get your family together and plan supports so it is done in a co-ordinated way.
2. Despite the cutbacks there are lots of supports available from the State. Your GP and Public Health Nurse are critical people you need to get to know. They will help you navigate "the system".
3. Respite for the primary carer (in our case my Mam) is critical too. No shame in it at all. Respite services might be in places that aren't kitted out like the Blackrock Clinic however, the quality of the care there in our experience is top notch. Brilliant loving people.
4 The Alzheimers Society are absolutely great. Lots of support, advice and day activity services. They will collect and drop off your loved one from home.
5. Accept they won't get better and that this is a gradual slippery slope. You will need to review and increase their supports as time goes by, not decrease them.

Finally, it is not your parents fault they have dementia so try and get over that - and it can be soooo frustrating at times. Ultimately they will pass away and I'm working on the basis that I don't want to look back when they are gone and wish I had done more.

I accept every situation is different but offer my experience here for what it is worth.

Slogger Jogger

This can happen so quickly and it can have such a profound effect on your life and those around you. 3 years ago it started to become evident that all was not well with my mam. Little behavioural things at first, but over time it started to get more serious. The last year to 18 months we've been fulltime caring for her and its been stressful and sad and a strain for all the family. You get the odd smile of recognition from the mother and you wonder if theres a part of her that truly does recognise you for who you are. The 24/7 care has stretched the family but brought us all closer as a result too. Recently we were very fortunate to get the mother into a home. The process to do so was long and arduous. Its a very sad time too. You are entrusting someone close to you to the care of others. Theres a guilty feeling about it too, but its necessary. We all have our own individual families and jobs etc and it gets very difficult to balance things out. To those of you who are having similar experiences my heart goes out to you. Thanks to all those in the health care and voluntary alzheimer care world who support families who find themselves in this awful situation. Treasure those who are close to you as you don't know when that time can be cut short.

LegacyUser

Hi all, my father was diagnosed with multi infarct dementia 2 weeks ago. He had 2 really bad strokes last summer, and as a result of this he is in a wheelchair & is not able to do much for himself at all. We made the difficult decision to place him in a nursing home last August.
Since early October, he was showing signs of great confusion, and after having a few kidney infections back to back, on which the doctors blamed the confusion, unfortunately it now appears that he does have dementia.
There are 5 of us in the family, 3 of us live more than 100 miles away and 2 more live closer to home & have young families of their own.
I'm going to come straight out and say the next bit, even though I know how bad it is going to look/sound. I dread going to see my Dad on the weekends that it is my turn. It makes me so angry (not with Dad) to see him the way he is, not talking any sense, not being able to move around. Its so unfair. But I also feel guilty over not wanting to go & visit him anymore. I just find it so difficult, and I feel so down for a few days before I go down & afterwards. I know we all have to step up & accept our responsibilities, so I do continue to go down, but its horrible.
Home is not home anymore, its an empty house. Since we started the rota, in order to give everyone a break, we take it in turns to go there, which means that we are always at home on our own, in a cold, lonely house.
I feel I haven't any chance to grieve for the wonderful man my Dad was, and I dont see much or any signs of that man anymore.
What scares me the most is that this could potentially go on for years, and I find myself wondering what kind of a life is that?
I'm sorry if I upset some people by my comments, my counsellor has said that it shouldn't be 'competetive caring' and that each person can only do what they are able for..... but yet I still feel guilty.
It really is a horrible disease isn't it?

bubbaloo

Selfishme - I completely understand your post. My dad is now in a care home but he was at home for 4 years with Alzheimers before going into the care home. Like you, I live far away from him and my sister had the brunt of the burden. I always felt the same as you - dreaded going to see him but went out of a sense of duty - more to my sister, to give her a break, than for my dad. I cannot now connect him to the person he once was. When I talk of him at times when I was growing up etc, it is like I am talking about a completely different person. The truth is that my dad, as I knew him, died a long time ago and I had to go through the grieving process. Counselling helped me to realise this. I now see him quite regularly but have accepted that he is a different person and that he appreciates the company, even if he is unable to contribute to conversation like he used to.
Dementia is known as "the long goodbye". It is so difficult but it gets easier with time. I wish you and your family the best of luck.

LegacyUser

Thanks Bubbaloo, I have to admit that after I posted yesterday (I was in a bit of a state) I got worried in case I would get attacked for not wanting to spend time with my Dad.
You seem to understand exactly how I feel - I only go & visit out of a sense of duty, and so that my other siblings don't 'give out' to me over it. Being totally honest, just with the last month or so, if I could find a good enough excuse not to go, then I wouldn't. And I feel terrible for feeling like this. I am going to counselling, and at my session this week my counsellor told me that she thinks I have reached my burnout stage.
She said fair enough that I have a duty/obligation to do my turn, but that I need to try & make it as easy as I can on myself for the next few months. So if that means only staying an hour on a visit rather than 2 or 3, then that is ok.
I know that one of my sisters feels the same way as I do, but I dont know about the rest. I am afraid that if I tell them how hard a time I am having coming to terms with this, that they will just tell me to cop on & pull myself together, that we all have to just face up to it and get on with it. I know that we do, and I AM doing it - but I dont want to go under & in to a big depression myself whilst doing it.
Did you really find that it gets easier with time? How do you cope if your Dad says something completely off the wall, do you play along or do you try & correct him? The nurses tell us not to correct Dad exactly, but to try & re-orient him as to where he is, but I honestly dont think he knows he is in a nursing home at all. He talks about having been here, there and everywhere during the week, when we know that he hasn't. Now I dont think it does him any harm to think that he was out & about, but it gets tricky then if he says will we go on out home after the tea and things like that. At the moment, he does not seem agressive or sad, he can be quiet but generally seems fairly content, which I know is a blessing.
My counsellor made a good point when she said that no one in this situation would look forward to the visits, because no one plans for their parents getting ill. But I am just going to have to find a way to deal with it if at all possible.
Thanks for listening, I wish you all well in dealing with this horrible disease.

bubbaloo

God, where to start? We made a decision not to correct Dad. My mum died some years ago and he started to ask about her. The first time he asked, we told him and he had lots of questions about a funeral etc. We made a decision at that stage not to respond again. It was too upsetting for everyone, so now if he asks about Mum we just change the subject. If your Dad talks about his "imaginary" trips I would let him. If it makes him happy to talk about it then why upset him? I think the nurses are right - this is what has worked for us so far. In the beginning when he was in the home, he used to talk about going home and that was very difficult. If you can avoid bringing him anywhere familiar that would help. We used to tell him that the doctors wanted to keep an eye on his leg or his back or whatever, and that he couldn't leave the care home until that was sorted. This avoided bringing him out and therefore avoided more questions about going home. We thought he would never settle there but he did and now if we bring him out, the care home is where he wants to go back to. He is 14 months in the care home and the first 6 months were very difficult but once he settled it made life a lot easier for all of us.
My sister was so very good to him and that always made me feel guilty, but to be honest, once we spoke about it, I realised that my sister felt much the same as me. She didn't want to be burdened with my dad's illness but felt under duty. She certainly had more of her heart in it than I did, but you might be surprised if you speak to your siblings. They probably feel much the same as you, but at least you're all in it together.
For us, there was a great sense of relief once my dad settled. We still visit but we know that he is happy there and we don't feel the great responsibility is on our shoulders now. We don't worry about his safety now which is a huge weight off our shoulders.
It honestly does get easier - to be truthful, I had to realise it was a type of bereavement before I could handle it. Like any bereavement, it takes time to come to terms with it but you will, and you will learn to handle your rostered weekends differently. You will never look forward to them but they won't be the huge issue they are now. You can spend less time with him, like your counsellor suggests - your dad become involved in the routine of the care home and any visit from you will be appreciated but he won't need you to be there for hours. Sorry for such a long post! Best of luck.

LegacyUser

Thank you so much bubbaloo, and I love long posts cos I tend to ramble on quite a bit in mine too!
What sort of things do you talk to your father about? That's one of my problems, I can never seem to think of anything to say to him that won't involve something that he can no longer do.......for example, he obviously can no longer drive, yet in his head he can. So if I say anything about my car (from getting it serviced to the price of petrol, stuff we would always have talked about in the past) then he starts asking where is his car and is it outside & maybe we'll head off soon, will he drive or will I?.....and it just goes on and on until I have to disappear off to the toilet and hope that he is distracted from that topic when I come back. Its very draining, I'm constantly on alert waiting to make the next 'deflection'.
The very same as you, my Mum passed away a few years ago, and I got caught totally on the hop a few weeks back when Dad started talking about her as if she was still here. I was shocked, and very upset afterwards, but its no one's fault at the end of the day and I know I will have to try & find a way to get used to it.
I hope you are right by saying that it won't make that much of a difference not to spend as much time with him........ already, he seems to forget that people have visited him (which I know isn't personal and is all part of the illness) but of course I'm sure the bit of company does please him, even if he doesn't express it.
Right, I'm rambling again. Its just good to talk it over with someone who understands - none of my friends have a sick parent, and I think that they would be horrified if I said that I dread going in to visit him etc.