What to tell my daughter

[hendy]

Hi Phillipa

It is such a dilemma isn't it? If I may add to my earlier reply? Our situation is not the same as yours in a lot of respects (my oldest child is 10 and worried about grandad), but we have had to face dilemmas about going away. In the years that my Dad has had this dreadful disease, we have always thought twice about booking holidays away and abroad. Ultimately we decided that we could not possibly think ahead and predict what was likely to happen to Dad (as we don't have a chrystal ball) Rather than curtail family holidays altogether, we went ahead and booked them. Prior to leaving the country contigency plans were put in place and special arrangements made in quite some detail. However as fate would have it the following happened

Band Tour to Germany - Dad recovering from diabetic collapse and on HDU a week before leaving.
Band Trip to Norway - A week before leaving Dad collapsed in home(severe reaction to meds) in a catatonic state
We usually take our summer holidays in this country and these have continued as usual. James is going on a 'residential' in the summer and if anything happened to grandpa during this time, we would probably tell him when he got back.
We have a family wide agreement that if anything happend to grandpa while any of the families are on holiday nobobdy will be contacted until they get back, even if the worse should happen.
This year we are going on a mediterranean cruise. These arrangements are probably wouldn't be acceptable for others, but at least we all agree and understand them
Sorry if this is a long reply, but its such an important issue for families coping with dementia
regards
hendy

 

[Philippa]

Thanks Angela and Hendy. I know we need help! I am going to be very busy (won't bore you with the details) for about ten weeks, starting April, and I have told Mum I won't be able to go in every day, sit with Dad, walk the dog, do all the shopping. I am slowly trying to get her to realise she cannot afford to be proud. She is nearly 78 and it's wearing her out. I have persuaded her to ring the doctor on Monday, and I will be there when the occupational therapist comes in. She bumped into a friend today while I was with Dad who said her husband has had AD for three years and is now in a home. She told Mum how good the SS were locally. I'm keeping my fingers crossed that she sees sense.

Back to the holidays. When I said my daughter has a lot of trips coming up I wasn't exaggerating - three long weekends, a six day trip abroad, a ten day trip abroad, a week in England then two and a half weeks abroad. All between now and August. Plus, as I'm divorced, as many weekends with her Dad as she can fit in. She is a very busy girl! As I said before, I'm taking one day at a time, one trip at a time. She's a sensible girl and has a great group of close friends at school. She is aware of how poorly Dad is and I have no doubt she talks to her friends. Another friend's grandfather has terminal cancer and I know they discuss that a lot.

Changing the subject entirely, I had to take Dad to the toilet today for the first time. I am utterly traumatised!! How on earth does everyone cope with things like that?

Thanks for you messages. They have been a real help.

Philippa

 

[rhallacroz]

Hi Philipa

Hi Phillipa
Yes you are busy it is hard to juggle but it has to be done. I know what you mean about the toilet it is hard at first but we are not at the stage where dad wear dad has to wear nappies and I and my daughters have to sort him out they are 8 and 11 and we all just take it in our stride I am sure you will too. At first I contacted my GP but he can;t refer you to social services that has to come directly from you all he can do is ask the District Nurse to visit or the mental heath team. In my experience you are best to contact the Elderly Mental Team of the social services and ask for a carers assesment that way you get things moving a hell of a lot quicker than GP etc. Give it a whirl and dont be fobbed off you will be pleasantly surprised hopefully.
Let us know how you get on.
With love
Angelaxxxx

 

[Margarita]

I had to take Dad to the toilet today for the first time. I am utterly traumatised!! How on earth does everyone cope with things like that?

I was also wondering if your mother gets any help from the incontinent district Nurse, as is he in pads now or still going to the toilet and is incontinent now then ?

As my mother like that .

As I found the transition stage in to pads one of the hardest stages for my mother to except as in urinating into the pads, rather then going to the toilet . Its been nearly a year now , even thought it does distresses her when she gets the feeling to go to the toilet . I have to tell her don't worry do it in the pads, but she won't not even at night time . she still get up to go to the toilet, only does it in pads if she been sitting down to long and I have forgotten to ask her to go to the toilet , as she can still remind herself to go to the toilet most of the time

I was advice to let her wipe herself, prompting her to do it herself for as long as she possablely (SP) can. she still doing it , they are days she sits on toilet and says she can't do it , but with
prompting she does it herself .

 

[BeverleyY]

Changing the subject entirely, I had to take Dad to the toilet today for the first time. I am utterly traumatised!! How on earth does everyone cope with things like that?

Thanks for you messages. They have been a real help.

Philippa

Thankfully, I am not at that stage, and I have to admit this is one of the issues that worries me the most.

In the last month of my Mum's life, her mobility was reduced to a shuffle, terribly out of breath etc. and I was washing her, and wiping her bottom etc... she was mortified by this (Mum did not have dementia, she had kidney failure and COPD and caught pneumonia and was too weak to fight it off )

Dad has Vascular Dementia, and I ask myself:

a) how would I cope if he were to become incontinent
b) how would he cope with me assisting him?

I had kind of told myself that by time they become incontinent, they wouldn't be aware anyway. Reading posts here makes me realises they many are aware, and are distressed by the fact that they are incontinent. This worries me terribly. I know he would be mortified, and I would say that he would absolutely refuse to allow me to help him. I actually think he would insist that I put him in a home, or worse, I think he would possibly kill himself

I know that may sound extreme - but, my Dad is a very proud man who is also extremely stubborn. It's something that I know he has said in the past (long before this illness), and I am sure that if he were aware he needed help in that way that he would choose not to live.

Another bridge that will need crossing whenever that time comes.

Beverley x

 

[heartbroken]

Philipa I contated ss for my dad as he has been struggling for 2yrs with my step mum, within 3weeks they had visited and set up direct payments so they could have someone they know to come in, they also didn't want strangers in, I have took the job but it could be a friend or anyone else they feel ok with I do know that in time I will find it harder, the sw has already suggested that another pa should come one day a week to try and help me get her to a group and have a bath (she hasn't had one in years only a wash down now and again).
It is hard when they are so proud, but we do our best and thats all we can do.
I would have a good talk to your daughter but also point out that it might not happen for months/years, my daughters grandad in law was told he hadn't got long and they fetch the family in 7times and each time he bounced back 3yrs later he died so please warn her it could be weeks or it could be months/years

 

[Margarita]

heartbroken I will find it harder, the sw has already suggested that another pa should come one day a week to try and help me get her to a group and have a bath (she hasn't had one in years only a wash down now and again).

Not sure what you mean when you say * get her to a group and have a bath *

But I do know that SW wanted my mother to have a bath at SS day centre but I know my mother would not of like that , as my mother can not get upstairs any more also can not get into bath . when she could get into bath she had to have a bath lift to get into it , but she got a fear of the bath life as her balance was going in her mind , so she thought she was going to fall .

even with the help of a carer I could not get her to sit on bath lift . So I gave up as it was distressing my mother to much as she would panic so much .

So now she has a wash down in sink in down stars toilet sink , they came around to do an assessment and are going to put a shower walk in unit in the down stars toilet .

Have you ask the team from the Occupational therapy to do an assessment on your mother mobility in how she gets in out of bath or any fears she has about having a bath , so they can do adaption to her house to put a walk in shower unit ?

As even if you own your own property they is a grant they can give you and they do all the adaption to the house or flat .



we had one put in when we lived somewhere before we moved into this house we are how living in

My mother did not like it as first as she hated the shower hose water running over her head , so I would not do it like that . I found it so much easer giving her a shower as she could sit down in an open space she got use to the walk in shower .

 

[heartbroken]

we have been trying to get her to let me help her have a wash down/bath/hair wash for the last two weeks but all she says is I can do it, we know she can't. the only wash she has is in a morning after she has done both in the night and she has asked my dad to help her, but this distreses her so much. dad has struggled with her for years not letting on what was happening until last christmas, he visited the doc's to be told want do you want me to do I was so mead I contacted ss. she has not been assessed yet we have a appointment on the 27th march which can't come soon enough. I have been told by another carer to wait until then and not to worry I'm not but dad is.

 

[Margarita]

she has not been assessed yet we have a appointment on the 27th march which can't come soon enough. I have been told by another carer to wait until then and not to worry I'm not but dad is.

Tell your father from me not to worry , as I also had the same problem with my mother , she got so bad that under her breast was red raw as she would say she wash herself , but she never really was .

only when she started to smell (sp) under the breast it was a way in for me , to see how she was really washing herself . As I just stood next to her . Getting her into bath was a nightmare .


I even read up something about putting a blue dye in the water, as that some how encourage them to get into the water I never tried it out mimd you .

My mother did get into bath for me , when I said that she was so smelly it was never going to heal if she never got into bath , but then on 2 occasion she got stuck in the bath could not coordinate her legs to get out . that I thought I would need to call 999 , but lucky for me I got
her out , another time my son had to help me lift her out .

Then a friend told me about the walk in shower unit that they put in for people with disability so that was it ! I push for that , till I got it for my mother .

I read that up in an AZ book that they develop a fear of water . push for a shower unit

I don't feel ashamed admitting on TP what happen to my mother in not washing herself , it humiliating for her anyway I know to except that this is happing to her , but the brain damage from the disease is taking away the logic part of the brain to comprehend that I am are only helping her , so yes she became very distressed about it and can get very angry about it , so its not worth not worth arguing about it with her .

Just have to find a way around it to help my mother , so for me it was getting the shower unit , loads of reassurance that she was going to be OK , gently calmly she let me help her .

as its not her fault its just one of the symptoms of the dementia, and they could take that into account when doing the assessments so try see if a walk in shower would benefit your mother , if your father would allow it .


when shower unit was put in , I told my mother I needed help for me to help her , so I got a carer in , I would help the carer help mum , then when mum got use to her . I move out of the way , saying I had to get something.

Its to much to one person to deal with , so I understand where your father coming from .

As it was hard for me not to take it personally when its happing 24/7 to not lose my temper , even thought I new it was the disease giving mum those symptoms . I am not saint , so I would just have to walk away for a while . Now with support in washing washing every thing more balance out for me . I can perceive things clearer .

bless her thought , she can still get on my nerves , but I don't lose my temper with her any more



your going to need help also if you don't mind me saying , as I have to step in also if carer is handling my mother in the wrong way as my mother can get distressed angry with her sometime even now as she use to with me , if on a day she so distressed I just tell carer to go . don't wash her , but now that only happen onces every few mouths .

 

[Philippa]

Gosh, you are all so kind. I was trying to be funny when I said about taking Dad to the toilet but I think I hit a nerve. Mum copes with Dad by pretending she's dealing with a baby. I coped yesterday by closing my eyes and just getting on with it. I'm sure the first time is the worst.

I think it was Beverley who was talking about pride. My Dad is so proud, but I think he doesn't really know who I am now so was OK to let me help him. He gets very confused with me and Mum. The only person he really knows is my daughter. He always brightens up when she sees him.

Another question for all of you out there. Dad's dog (always a bit odd, definitely the runt of the litter) is totally petrified of him, to the point that she won't be in the same room as him, sometimes refuses to eat and generally appears miserable. Mum has been so upset about this that she asked me to take the dog as she is so much happier at my house. Do animals know when something is wrong?

Hope you all have a good Sunday.

Philippa

 

[117katie]

Probably like humans: some do - some don't.

Our cats certainly knew when there was something wrong.

Katie

 

[Grannie G]

. Do animals know when something is wrong?

Philippa

Hello Philippa.
When my father was very ill, his dog wouldn`t move from outside the bedroom door.
He barked only to go outside, did what he had to do and returned to his `guard duty`.
My stressed out mother accidently reversed the car onto the dog, who was getting too old to get out of the way in time. He had to be put down.
My father cried.

 

[germain]

Hi Philippa,

My Mum adored her very old dog but it got to the point where she was really neglecting him and then we witnessed a couple of huge kicks ! She was a life long dog lover who would never harm any animal but the developing dementia made her treat the dog quite badly (she was never aggressive with people ) - is this a possibility with your Dad ? We would have sworn that she would never do this so it was a case of "seeing is believing"

Hope you can take the dog without too much extra trouble

regards
germain

 

[Margarita]

Hope you don't mind , but I like to leave this link in case anyone
interested in the grant to get any adaption done in they house

Disabled Facilities Grants

http://www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome/DG_4000642


Independence at home

http://www.direct.gov.uk/en/DisabledPeople/HomeAndHousingOptions/YourHome/DG_4016448

Dad's dog (always a bit odd, definitely the runt of the litter) is totally petrified of him, to the point that she won't be in the same room as him, sometimes refuses to eat and generally appears miserable. Mum has been so upset about this that she asked me to take the dog as she is so much happier at my house. Do animals know when something is wrong?

Sounds like my dog , if anyone go on holiday his got the hump looks all depressed , his putting on to much wright vet told him his got to go on a diet , now his all depress giving me the puppy bog eyes .

When I go on holiday , then mum go to respite , so we both gone . My daughter, son tell me his sad all the time , when I get home his all happy , but very unsettle then I pick up mum and his back to his normal self .

dogs are very sensitive they pick up on human happy , sad , angry energy. Dog dose not go near mum when she angry he come running to me , my mother so moody with the dog he just keeps away from her . unless she got food for him .

but then when she gone his all sad looking .

can all depend with if your father change towards him , so he stop eating food for while . may be your mother or yourself need to give him some TLC and he pick up agina and start eating .


Our dog was my son dog when my son left him with as , he would not eat also , took me a good year for the dog to get use to me being his master . not my son .

 

[Philippa]

You've really hit it on the head, Germain. I have seen Dad kick his dog, and mine, not to be nasty, simply that he can't walk very well and dogs, labradors particularly!, do seem to get in the way.

I'm quite happy to have another dog around the house. I had two until my oldie died. I just feel sad that Mum misses her so much. I ask her every day if I should bring her back. I think Mum has so much to cope with that it's a worry off her mind.