My mother has Dimentia - I need help.

[fordOwner]

Hey guys, thanks for reading my thread. - its a little long.

My mum has been Diagnosed with Dimentia (Like alzheimers, only she realises that she forgets things and finds it hard to consentrate) last year and it is getting worse.

I am her only child and her husband (Dad of course) passed away 10yrs ago so it has now become my responsibility to look after her.
She only recently had her license taken off her as she had to resit the test and ultimatly failed. So I have to take her shopping once a week. On top of this I have to pay her bills for her and sort out and organize her life as she just cannot fathom what is going on. (she asked me yesterday If she has anything to worry about this week!)
She is on medication but I have to keep on her to take them. They are marked daily like the pill and she has stuffed up the days.
She is very very thin now - 35kgs as she just does not eat. She cant get her head around how to cook, I give her simple lessons on cooking meat in the fry pan or cooking a frozen lasagne in the oven but she has now forgotten how to predict the time as in 'dinner will be ready in 45 minutes from now' It would be good if she could set a timer but she cant figure that out either. So Im now worried she will burn the house down after forgetting dinner is on.
I have heard there is a bus service to take people shopping but she is way to shy and I believe this would FREAK her out.
Every one is telling me to put her in a home but this will destroy her IMO.
I also have to bite my toungue in frustration with her ways of doing things.

I could go on forever on this topic but ill keep it this short. Does anyone have experience in this? or any ideas on what I can do to take the pressure off me a little? or any organisations that can help?

Thanks
Lee.

[fangq]

Originally Posted by fordowner

Hey guys, thanks for reading my thread. - its a little long.

My mum has been Diagnosed with Dimentia (Like alzheimers, only she realises that she forgets things and finds it hard to consentrate) last year and it is getting worse.

I am her only child and her husband (Dad of course) passed away 10yrs ago so it has now become my responsibility to look after her.
She only recently had her license taken off her as she had to resit the test and ultimatly failed. So I have to take her shopping once a week. On top of this I have to pay her bills for her and sort out and organize her life as she just cannot fathom what is going on. (she asked me yesterday If she has anything to worry about this week!)
She is on medication but I have to keep on her to take them. They are marked daily like the pill and she has stuffed up the days.
She is very very thin now - 35kgs as she just does not eat. She cant get her head around how to cook, I give her simple lessons on cooking meat in the fry pan or cooking a frozen lasagne in the oven but she has now forgotten how to predict the time as in 'dinner will be ready in 45 minutes from now' It would be good if she could set a timer but she cant figure that out either. So Im now worried she will burn the house down after forgetting dinner is on.
I have heard there is a bus service to take people shopping but she is way to shy and I believe this would FREAK her out.
Every one is telling me to put her in a home but this will destroy her IMO.
I also have to bite my toungue in frustration with her ways of doing things.

I could go on forever on this topic but ill keep it this short. Does anyone have experience in this? or any ideas on what I can do to take the pressure off me a little? or any organisations that can help?

Thanks
Lee.

Try http://www.alzheimers.org.au/content...TOKEN=16188182

Steve

[boss-290]

G'day mate,

I'm very sorry to hear about this.

Haven't her doctors organised like a... what do you call it, like a counsellor or something like that so they can give you advice on how to properly look after her.

Perhaps also someone can come around to her home and look after her, just so she is safe.

Its wrong sending someone to a home just because some people think they are an inconvenience.

Hope everything works out for you and your Mum.

Cheers

[MITCHAY]

You will most likely find that eventually you will have to place her in a home. They have the time and care that they need. If you somehow manage to tough it out you would be a strong as person. I have not seen my grandmother in years as she simply does not no who I am.

[mrnsx]

this comes to your personal decision mate,

if it was me, ill quit my work, talk to cerntrelink about the issue and look after my mother full time (not the best life, but she raised you for 20 years of your life so its fair to pay back some of these years).

it sounds to me that your mother is more depressed than anything else because i know some1 who has dimentia and there just fine (although they forget things).

just show your mum that you love her, and that she is going to be fine.

(this is all assuming that you are not married or committed in any way).

other than that, ask about nursing homes or retirement homes if you cant look after your mother full time

[Outbackjack]

My sisters and myself went through exactly this about 3 years ago. My Mum ultimately ended up in a home, where she still lives. Health wise she is doing really well, but the alzheimers is slowly getting worse. Medication can slow it down, but not stop it.

The hardest thing was finding a home that was "any good", if you know what I mean. Eventully we found a beautiful lutheran home on the Gold Coast. They had a vacancy but I had to pay the 115K to get her a room. She has never looked back. I visit her about every 3 months and each time it takes her a little longer to work out who I am. Very sad.

There is no doubt that you will end up having to place her in a home. It will be one of the hardest things that you will ever do. I hope that you are able to see her go into a well run caring place.

Good luck.

[Leah]

Hi mate, very sad story. I know what youre going through as Steve and I had a similar thing with my dad last year. In march he had a major stroke and we were told he wouldnt make it. To cut a long story short he did make it. He had complete paralysis of his right side, couldnt talk, walk, eat or even go to the toilet. He was trransferred to the hospital I work at for rehab which i think was the only good part because i could see him 3-4 times a day and stay there at night until he went to sleep.

After a few months of rehab he came home, he could walk with help, would eat only a very small amount, and still couldnt really talk. I dont think Ive ever been through such a trying time. Its so hard seeing someone you love, and someone who brought you up from a baby, needing you to feed them, clean them and communicate with them as though they're a child. Before his stroke, he weighed about 110kgs of pure muscle, by the time he came home, he weighed about 60kgs and kept loosing about 3kgs a week.

I work full time so it was impossible to stay with him full time. My mother worked, but looking after my father was just "too much". It would mean she would loose valuable socialising time with her friends. So it was up to Steve and I to do everything. Thankfully Steve did all the daily looking after him, something I am forever greateful for and I dont know anyone who would have done that for me.

fordowner - I feel for you mate. I think working at a hospital helped me understand what resources were available for support for my dad and for us. You should speak to a local GP about the troubles and worries your having. You should get a social worker involved, thats their job. They can offer you support services like hospital in the home (HITH), district nursing services etc. You should also look at putting your mum on a sustagen suppliment if not already. When dad was loosing the weight they made us give him sustagen 3-4 times a day to drink. Its supposed to help put weight back on.

I would speak to centrelink, although they were any help in our case. If you are caring for your mum a certain % of your time, youre entitled to a carers allowance. There is also some support services around in communities where volunteers can come and spend time with your family to offer you a bit of "time away".

I think it would be a very hard thing putting a loved one "in a home". I think before doing that, you need to get some help from a social worker. Dimentia will only get worse, and later on you may need the support of a home. You have to think about a quality of life for her, which is why youre looking after her. But in the long run you also need to think of quality of life for yourself. In the long run, I think you only have the time you have with them, make the most of it while you have it. My dad died in July last year and I would do anything to bring him back and keep looking after him.

Mate, youre a good person doing what youre doing, I applaud you! Best of luck with everything and if you want more info on HITH or anything like that let me know.
Leah.

[fordOwner]

Thanks for the feedaback guys.

The doctors just gave me 2 piddly pamflets that just outlined signs and symptoms.
I would quit work, but I have finally reached the my aim in regards to my career as i have only just finished my 3 yr course and got the job ive always wanted. Since she is only 58 I would spend the rest of my life on a very very low income. The thing is I want to start a new life for ME now as well as HER. I now have a great job and girlfriend with asperations of buying my own home, getting married, kids, etc. This may sound selfish and I do feel a little that way. But Im sure I could continue with my dreams whilst caring for my mother too with some help.
ALSO she has just bought a new house and she has fallen in love with it. To put her in a home now would give her depression (again).
But understandably, she will inevidibaly be going to one.
Thanks Steve for the Hyperlink too! There is a Dimentia helpline number on the website that I will call.
Thanks heaps too Leah! It feels as If im alone on this topic. But to hear others experiences helps. Im sorry to hear about your dad.

[ZA-289]

Thats tough, Good luck fordowner.

Hope I never have to go through that. It's terrible to see your loved ones struggling with basic life tasks. Makes you realise what really matters...

Cars? who cars about cars.

[iCat]

Contact your local council - you will be amazed at the support services they provide for just this situation. I used to be a volunteer with a council service where you visit people who are housebound and lonely, and the lady I visited had quite advanced dementia.

She had people from the council who brought her her meals and helped her with her medication; she had someone to take her shopping, someone to help clean, and me who visited and took her on outings. This was all supplied by the council for a very nominal fee. Now, although her daughter did live next door, this lady was able to live a very independent life, and the role of her daughter was mainly to keep an eye on her.

This lovely lady was 96 when she was finally moved into a home. But the thing is, that decision did not have to be made whilst she was still "coherent". She lived quite happily with dementia for a very long time, albeit with a lot of support services, and when the time came to go into a home, she just thought it was a holiday and a lovely hotel and lots of new nice people to talk to.

So right now, I don't think that is a decision you really have to make at this point in time. Check your council for their support services. And keep strong.

[fordOwner]

Thanks Mhgill. Appreciate it.
Icat - I definatly WILL call the councill too. I did not realise they offererd so much support! The councill/Shire my mother lives in is apparently the Largest in Australia so im sure they will have a large range of support. I'll give em a go.

I just called my mum to see if she is having dinner and taking her pills. She has cooked her self Italian Rissoles I bought for her but they are too spicy hot for her ha ha. And with the pills - She just moaned and said its all too hard. (All she has to do is take the pill with the weekday printed next to it... but, thats dimentia)

[XRchic]

I used to work as a nurse and I worked for a while in a nursing home.

My advice, is that when you do decide to make that move, make your pick carefully. I have seen a lot of them and there is a MASSIVE variation in quality. It is worth it to pick an expensive one if you could afford it because the level of comfort and care really is that much better... some of them are like hotels.

Something to also consider is a hostel. I have worked in one of those. They are like independent living quarters sometimes within nursing home grounds. But the resident has their own room, bathroom and carport if they have a car. They can pretty much come and go as they please - its just like a small unit. The advantage is that the resident can choose their degree of dependence. You can choose to have all your meals cooked at the nursing home kitchen and delivered to you, or you can come to the big dining room for dinner. You have a visit every day by the nurse, often more than once a day to help with showering, getting in and out of bed or just help with pills. The nurses usually have the pills and dispense them for each resident when they are due. There is a call alarm button in every unit.

I found that the residents were quite independent but if they have memory problems, they could still be looked after. They could also go on group trips to do shopping or day trips in the country organised by the nursing home if they liked.

Its not a bad compromise for someone who needs their independence but needs a little help too.

Another idea is more of the "retirement village" type thing, where the residents have a whole detached mini-house and are watched a lot less, but still have access to the same services as the hostel residents do.

My Dad's Mum just left her own home at age 92. Her husband died 8 years ago and she has been in the big old house since. She really hated leaving the house, they had been there for 50 years. However, she decided in the end that she should go, so she picked her place and went. She is in a nice hostel type place and has made loads of new friends, they go to the footy together and she can have fun without having to worry about cleaning, cooking, taking pills etc... she hasnt been this happy for a while. She didnt want to live with any of her children (they offered) as she said they are all boring and she wanted a life! hahaha.

My Mum's Mum is in a very expensive nursing home in the Adelaide Hills. She is not really aware of anything around her at all (she is 92) but Mum is happy that she is being cared for very well, and has every comfort. There is no way that she could have been looked after anywhere else, as she is not really conscious anymore and needs full time medical and nursing care.

Another option may be paying for a carer to come to your Mums home every day and help her with pills, get Meals on Wheels (or equivalent) for her cooking needs but I guess that costs money....

It must be hard for you mate, I would find that soooo hard and I know I am going to have to make that decision one day for my parents... I just hope that by then I can be earning enough money to have a massive house, a big granny flat out the back for my parents and be able to afford a full time carer so they can live with us, enjoy the grandkids but never have to go to a home and also have all the care they need... LOL.

Good luck mate, I hope things get easier for you!

Jac

[fordOwner]

Wow XRchic! Im gratefull that you and of course others have spent the time and effort to write a lengthy reply to offer me advise on this matter. I never realised there were so many residentail arrangements.
Where would the disadvataged be without people like you!?

[MO]

Besides the very good advice offered..you should also look at getting power of attorney..this gives you the right to make decisions about your mums welfare when she is incapable.

Please check out all that has been offered and see a lawyer about the
power attorney thing AFTER you speak to your mum about it.

[outback_ute]

Good luck with it fordowner, one of life's more difficult challenges no doubt. I have observed but not had too much direct involvement in similar situations with a few older relatives, so I can't really offer much constructive help but I can relate to what you are facing.

It sounds like you can't rely on her cooking any more - my great-grandmother was like that, she would cook dinner and then forget to eat it & whoever visited the next day would find it in the bin. Also something to consider is an accident due to carelessness brought about by the dementia - when my grandfather's dementia "took hold" properly we could identify quite a few minor incidents that in hindsight were caused by it also. He was the same, concentration and planning type skills very poor but fortunately his memory was ok.

There are doctors who specialise in dementia too if she has not already seen one.

Good luck.

[debacle-racing]

i feel for you mate.
hang in there and put up with it.
is worth it.
good luck, justin.

[fordOwner]

Yeh, Im in the process of orgainising Power of Attorney. She did not want to as she thought she will have NO access to her money. but after she punched in an 18 digit pin number at the ATM she realised why we both should get it done. (dont know what number she was typing!)

Thanks Outback_ute. Yes she has seen a specialist, they gave her a prescription to halt the process. But it is a scary clinic for her. And they only have pamphlets.

[XRchic]

As stated above, power of attorney is definitely something you would want to consider, especially if she is forgetting things. You would want to discuss it with her asap, so she is still with it enough to be able to understand the concept otherwise it will be more difficult to get it organised later.

It will make it easier for so many things later. it will give you power to control all her legal affairs. That may be something like ordering a new bank book for her when she loses it/forgets where it is, replacing all her cards for her when she leaves her purse on the taxi or on the bus... it means that you will have a say about her medical treatment when she is incapable of deciding for herself and it will mean you can keep an eye on her finances when she is no longer able to, such as selling her house, setting her up in her new place... she wont have to sign a whole bunch of forms and deal with real estate agents etc.... you get the idea!

It means that you will be able to make sure she is looked after if she moves out of her house, so that bills are paid, that she has money to spend when she goes out, that all things she needs will be taken care of without her having to phone places like Telstra, Centrelink, or any other annoying organisation....

It is definitley a good idea - my Dad has power of attorney for his Mum. She doesnt have dementia but she is old and forgetful and has lost heaps important stuff and he has been able to sort so much stuff for her without her worrying...

As far as food in concerned, I would definitely consider Meals on Wheels or whatever you guys have there for that. They design meals for people with certain needs, such as high calorie meals for elderly people who dont eat much (common problem) or high protein or even diabetic meals... they deliver them to the house every day. It is mostly run by volunteers (in SA anyway) so its not ultra expensive either and its good food.

I think a lot of people are prepared to offer advice on this subject because everyone has a parent, grandparent, aunt or uncle that does or will need taking care of one day, and that we all know we will need taking care of too - its a problem we all share and sometimes it is easier for some and harder for others...

I feel compelled to help mainly because my Dad is just turned 65, is very strong and healthy at the moment, and he is my world. I love my Dad so much and I would hate to think of him going downhill but I know he will one day. So in anticipation of that, I really do feel for you and I really do hope things go ok!

Jac

[Falcon_Phill]

My mum was looking after a dimentia patient for 5 years, she died last week. Shed occasionally try to smoke the wrong end of her cigarette, not a nice way to live.

[mik]

yep good advice given here from others , my mum also has a memory problem i know what you are goin through, my mum had a severe brain hemorage she lost the last 30 years of her memorys but unlike alziemers she has recovered most of her long term memory but her short term memory is gone for ever and some of her reasoning skills are affected as well, but it sounds like your mum needs to be under constant supervision she`s low in weight a nursing home may be able to bring her weight back up and give back some qaulity of life,( i`m not qaulified to judge but it seems that way) i understand your mums frustration when she cant remember something that she`s known all her life and it wont come to her and at other times it will just come to her my mums the same , if you go the nursery way she will probably hate it to start off but she will make friends there after a while and most of those places have entertainment and activities and you will have peice of mind she`s being looked after, perhaps your mums gp might have some suggestions for a suitable nursing home, ring around the help is out there, hope it gets better for you and your mum
regards mik

[normxb]

Fordowner

Some very good advice here , especially XRchic and MO . Sad to see this happening to your Mum at such a young age , My Mum is 81 and just starting to get "wandery" , Even though we live in a small town , we have fantastic aged care here (Young NSW) . At the moment she get's " Home Care " once a week to do the Washing & Ironing , change the bed , Vacuum , Dust , sometimes her Shopping if she's not well and any other little things that need doing around her unit . She will increase this until she finds it a problem , then she's going to book into the local retirement village ( she won't live with a family member , even though we've suggested it) the village has 3 stages of units , "Self Care" , "Supervised" and "Full Care" , absolutely brilliant .

There IS help out there , it's just not common knowledge where to find it ,hospital Social Workers are a good place to start . We have 2 here , "Home Care" is run by "Community Health" (Health Dept) and the other is "Mercy Care" run by the Catholic church ( you don't have to be catholic for this service ) . When Dad was alive , they would come and shower him and also keep an eye on Mum and take them shopping . (Shopping was stopped because of insurance problems) .

My Mum is still very independent and is still able to get around on a "Scooter" . she won't won't call on my wife or myself because she looked after her father in law from 1946-1968 and her mother from 1968-1992 and say's "she'd never do that to us" , but we alway's "visit" 4-5 times a week .

I hope things will work out for you , our families thoughts are with you .

Norm & Dianne

[XF Falcon]

I'm so sorry to hear about your mothers condition.

My grandmother had dimentia and it was very difficult and extremely sad to see them slowly getting worse. Just reading your story really hit me.

I hope you find the help and support you need to make everything easier for your whole family.

[Squalo]

I feel for you Fordowner, I was in my early teens when I watched my mum care for my grandmother when she began to suffer with dementia. She nearly blew the house up by leaving the gas oven on for a few minutes before she remembered that she was going to cook something - thankfully she only singed her hair, no other injury.

The power of attorney thing is a good move, along with it you need to ensure that your mum's will is completely up to date and watertight (having gone through major headaches when my partner's parents died in a car crash I can attest to the heartache this can create).

You'll need every reserve of your patience to deal with the days and years ahead of you. Don't forget to look after yourself and your partner too.

[Grum]

Try these links mate.

http://www.dadhc.nsw.gov.au/DADHC.htm
http://www.health.gov.au/internet/wc...lth-ageing.htm

My mum works as an assessor for Home Care NSW and they are a government organisation that provides care for aged and disabled people who are living in their own home. The do all sorts of services. I’m sure there are similar departments in WA.

[Sourbastard]

Originally Posted by fordowner

I would quit work, but I have finally reached the my aim in regards to my career as i have only just finished my 3 yr course and got the job ive always wanted. Since she is only 58 I would spend the rest of my life on a very very low income. The thing is I want to start a new life for ME now as well as HER. I now have a great job and girlfriend with asperations of buying my own home, getting married, kids, etc. This may sound selfish and I do feel a little that way.

Dont feel guilty mate, and I wouldnt worry about those who say she looked after your for XX years so you should do the same for her. I dont raise my kids to look after me, I raise them to better themselves, to be happy and to live a good life, and to remember me to their children. I want my kids to have careers and be successful, I dont want them wasting their lives wiping my backside when im 99 and not out living on a meager centerlink stipend.

Id assume as much as to say thats what your mother would want for you too.

[adrianb]

Mate I commend you for looking after your mum and for figuring her into your plans for the future. Hardest thing in the world to go through and especially with your mum at such a young age.

My grandma had the same thing - for the last few years before she passed away (she was 93 when she died) she was pretty bad. She moved out of her house of 40 years to a small unit/retirement village thing when she was in her early 80s and lived alone there til she was 90 and she got to the point where my family just had to decide to put her in a home for her own safety. She flooded her bathroom twice and turned the gas heater on once but forgot to light it! Reading your post, like XF Falcon said above, brings it all back. Her last christmas with us she didnt know who anyone was or where she was and was getting shirty all day cause she reckond my grandad was coming home and she needed to get home and cook him dinner even though he passed away almost 20 years before. She was completely in her own world but that didn't stop her from giving us a good old fashioned telling off for not letting her go

Theres definitely carers and things you can get to help you look after her as well as a carers allowance. I think first off you need to think about whats best for her health in the short term and then worry about longer term plans. 35kg is just very dangerously thin and shows she's not at the moment really coping on her own. Maybe start with a carer and putting in some time yourself to make sure she does the day to day like eating and so on and go from there. If she needs more intensive care then consider her living with you or a nursing home if she needs more constant care/supervision. There are some excellent nursing homes around.

[Blue Oval Mopar Man]

Fordowner, I feel for you mate ! I dont have any advice . But I wish I could help in some way ! All the best , I am sure youll do whats best for your dear mum . She is lucky to have someone who cares like you do !

[Van D]

Is it possible to hire a carer for her at her home?

My grandma has quite bad dimentia now, and although my mum, dad and couple other family members tried to look after her, it ended up just being too much.

She's now in a nice home that specialises in things like dimentia etc and it's a great looking place. She's quite happy now that she's there. At first we were worried about putting her in a home as well, but we just had to make her realise that it was the best option for both her and everyone else. She still gets daily visits and comes out with the family, so it's not like she's cut off from everything.

IMO it's either a home, someone else to look after her full time, or you doing it yourself.

Good luck mate

[dan.76]

mate ive had similar with 2 of my pops, my maternal grandfather who died last year had dementia as well as prostate cancer and nan used to have a big list of names next to the phone telling him who the people calling him were and their relationship to him. the last time i went to see him with my 1st child he asked me how i was and what he could do for me, didnt have a clue who i was.i was shattered . then after about half an hour of talking about the weather and other crap he said so how is your big dog ? funny the things that they remember, could picture a dog he had seen twice but not me who had lived with him for a few years.
also my pateral great grand father has demntia and now lives in a nursing home, his wife died about 10 yrs ago and since then he has gotten worse. when the family talks about him we also see the funny side of things as well. took up smoking at 93 cause it wont kill him now, then 5 yrs later one day forgot that he smokes and wont touch the stinking things.
he is nearly 101 and believes that he is boarding at a pub and not in a home. when my grandmother goes to visit him he always says that he will go home with her but forgets.

dementia is a very terrible thing but i think that with the right support and environment the person can live happily in a world of their own.
cause thats all that matters really isnt it , if you are happy with your life.

[fordOwner]

Thanks to every one for the support! I have read every reply thoroughly and I REALLY appreciate it.

Thanks again.