Nursing homes, Guilt & Families at War

[Helena]

Yes but .......all the AD/VD patients are falling and breaking hips etc because the entire set of care services for the elderly are wholly inadequate

Equally the current generation have a mindset of staying in their own home at all costs whereas really if they moved to something small or sheltered housing earlier the problems would be less severe
Certainly if my Mother had accepted good advice from many people 10 years ago she would not be in such a difficult situation now

 

[Lila13]

That would certainly have applied to my mother! She could have moved 6 years ago, to somewhere more convenient for her and nearer to me. To a certain extent people make their own choices, and then those choices are inflicted on family and others.

As she wasn't happy in that house I wanted so much to see what she'd be like in more congenial surroundings.

Lila

Equally the current generation have a mindset of staying in their own home at all costs whereas really if they moved to something small or sheltered housing earlier the problems would be less severe
Certainly if my Mother had accepted good advice from many people 10 years ago she would not be in such a difficult situation now

 

[Lonestray]

Why I go it alone

Dear Tressa, What a wonderful array of views I find on TP it's so interesting to see so many points of view form different perspectives. Well here's another one. I've spent most of my life observing society and since arriving in this country as a 17yr old I still find it strange. The best way to discribe me is like a stray abused dog released to the outside world at age 16. I kept my distance and took what I could and ran. Never allowed anyone close until I met my wife when she was 18 and I 21. We have been married 51 yrs next month. She would always said of me "Your strange". I remember once her telling friends how strange I was. I had been on a run when I was met by a wonderful smell. Wanting to share it with her we rushed in the car to the spot, pointing to the hedge row flower, she said was honeysuckle. I explained as children we knew honeysuckle to be the flower of the clover which we ate in addition to the leaves on the trees, haws etc because of hunger.
This Friday night I asked some teenagers to stop making a racket one asked "Didn't you have fun when you were 16?" How could I answer that, I never know my birth day untill I got hold of my birth cirtificate at age 17.
My wife has ALZ for 11 years now and I have been through almost all of the experiences I have seen on TP. More than 4yrs ago I had the heart breaking task of letting go and placing her in a NH. What we experienced there shouldn't happen period. I would never tell or advise anyone to take on caring for a loved one on their own. We are all individuals with our own situations. I chose to sell our dream house of 25 yrs and move to a smaller one to care full time. Like the stray who was won over by a kind gentle girl I will guard with my life and I love her all the more with this illness. Strange as it may seem I enjoy every day so long as I'm with her. Although for the past 3yrs and 5 months she can only move one hand a little it is easier to care for her now than when she was always 'going home'. The hard part is the cooking, ironing, shopping and cleaning, there'r never finished. The most telling words I think I ever uttered were when questioning the medication given her in the NH. The doctor was sommoned. He must have been told I was spending up to 9 hrs a day at the NH. "I think you are doing a wonderful job" he remarked. Annoyed "No I'm not" Surprised he asked "Why ever not?" Answer "Don't dogs look after their pups" The words just shot out, now I know they are apt in to-day's world. Take great care and God bless. Padraig.

 

[Kayla]

Sheltered housing

Helena's and Lila's thoughts about sheltered housing were interesting. In this area, the sheltered housing is only available to people who do not own their houses and have limited savings. Social or medical needs are not considered at all. Mum would have been quite happy to have moved into a one bedroomed flat from her three bedroomed semi.
When my Dad was in hospital with heart failure, we looked into the possibility of selling the house and buying a small two bedroomed bungalow. The estate agent told us that they no longer existed in our area, because families buy and then extend the accommodation, making use of the generous gardens. The original housing estate, built inthe 1960's, had a variety of housing to suit both families and retired or elderly people. The planners seem to just let builders do what they want, without thinking of providing a balanced mix of accommodation.
There also needs to be something between living independently, and being in a Care Home. If people can do some household chores themselves, but need meals provided and medication controlled, then why not let them? Perhaps then the very elderly would be more willing to be looked after in safe surroundings.
Kayla

 

[Canadian Joanne]

Amy, I agree whole heartedly, I think there is a great difference between spouses and children taking care of AD patients. The children usually have their own spouses and children to think of. The spouses hang in there so much longer.

Having said that, my chiropodist has been taking care of her mother for 10 years at home. Every case is individual and different, just like every dementia sufferer.

Tressa, I've said this before (bit of the old AD repetition there ), I've been told that it may be better to place someone in a nursing home while they are still capable of developing relationships. It did help for my mother - she has been in a NH for over 3 years now.

And yes, I still suffer from guilt occasionally. I'm sure I always will. But my mother would have required 24/7 care & I was unable as I was working. Using her money to support me while I took care of her was not an option I wanted to exercise as it would have been unfair to my husband & I to lower our standard of living if we only took what the NH cost and unfair to my sister if we took my salary, as that would have depleted my mother's money much faster. My sister was then a divorced mother of two so she had her hands full & couldn't take Mum.

My mother is well looked after in the home, we visit 2-3 times a week.

A person can only do what is best for them but uprooting your mother to Belgium - there would be the language problem for starters.

Yes, looking around now at homes is a good idea.

Take care of yourself, try not to feel guilty (yeah, I know).

Joanne

 

[jenniferpa]

Kayla, I know exactly what you mean about lack of sheltered accomodation. When it became clear that my Mother could no longer live alone, I searched all over the area in which she used to live for something suitable (Lincolnshire) but ended up having to move her 80 miles away to near Coventry. Companies are building this sort of accomodation (very sheletered, with as much or as little help that you need) for people to purchase, but there aren't many of them at this time. Her purpose built apartment is next to a nursing home, and the residents of the apartments are all at different stages from wheelchair bound to completely mobile. My Mother has all her cooking, cleaning and laundry done for her but some people don't. I really really wish she had moved there prior to her strokes - she would have got so much more out of it than she does now.

Jennifer

 

[Lila13]

There are nice retirement flats near me and some people in them have carers coming in 24 hours a day.

I must remember to move somewhere suitable before it's too late. Though of course my situation will be so different from my mother's, not having any relations I could rely on. To a certain extent I think we all have a responsibility to plan ahead if we can.

Lila

 

[Helena]

I thoroughly agree we have a duty to plan for sensible accomodation and care in our old age ........our parents generation were bought up in the " I had children to look after me in my old age " mindset along with the "its my home and i am only going out of it in a box" scenario


Maybe the struggle of trying to cope with elderly AD/VD parents will make us take the situation very seriously

 

[jenniferpa]

..our parents generation were bought up in the " I had children to look after me in my old age " mindset along with the "its my home and i am only going out of it in a box" scenario

I really don't think that that idea ever entered my Mother's head - in fact she still says how thankful she is that I have a life that DOESN'T include living with her and caring for her full time. I do think, though, that circumstances creep up on you. Finding it difficult to get up stairs? Have a stair lift installed. Finding it difficult to go to the supermarket? Have groceries delivered. Cleaning difficult? That's what cleaners are for. These things become minor inconveniences, until suddenly, something happens and they all join together to become insumountable.

Jennifer

 

[Helena]

Hmmm however my Mother refuses to even accept theres anything wrong or that she needs help yet she phones up creating problems and trouble day after day and certainly has never said we have our own life to lead

 

[Margarita]

jenniferpa

Only downfall is when you cannot have a stair lift installed because you live in a block of flats on the second floor with no life and rent from the Council who say that there is people worse of then my mother And I suppose there is


.

 

[jenniferpa]

jenniferpa

Only downfall is when you cannot have a stair lift installed because you live in a block of flats on the second floor with no life and rent from the Council who say that there is people worse of then my mother And I suppose there is
.

I guess, but I'm sure it doesn't feel that way!

Jennifer

 

[jenniferpa]

Hmmm however my Mother refuses to even accept theres anything wrong or that she needs help yet she phones up creating problems and trouble day after day and certainly has never said we have our own life to lead

Helena, I have often said that people are like cheese - if they were unpleaseant when they were young, aging them won't make a blind bit of difference.

I do sometimes wonder whether vascular dementia (as opposed to alzheimer's) has a tendency to make people who were one way more so, if you see what I mean. I'm sure it varies though.

Jennifer
(who is very thankful that her Mother was and is very sweet).

 

[Helena]

I too believe that Vascular Dementia exacerbates previous nasty tendencies

As I said before my Cousin and her husband showed me 2 pictures

Good and Evil ...........the good was my sweet aunt as i had always known here even when she suffered VD ...........Evil was his Mother who had to be dragged out of the house kicking screaming and hanging on to door handles

That will be my Mother for absolute certainty

 

[Margarita]

Jennifer
I guess, but I'm sure it doesn't feel that way!

Your right So I don’t think about it just let it go or other wise it just stress me out , Just got to get on with it . your mum sounds lovely


PS
Tressa How is it going with you ?

 

[janjan]

I doesn't help matters when your mom can be a bit stubbon over having a bit of outside help with general things like someone coming to wash and dress my dad a few times a week. It has taken nearly a year for her to let a stranger come to her house to do this. Evertime the SS asked her did she want help she said she was managing ok. Untill it got to the point when her GP gave her stronger medicine. After the first visit, from a nice younge lady, younger than me, she said. [ Made me feel about a hundred ] She said i don't get so out of breath, trying to dress dad in the morning, i can sort my washing out and have a cupa while shes here, and she made the bed as well, and we had a nice chat befor she went. Moms from the old school, you manage has long has you can looking after your own. I gritted my teeth to say i told you so. Janet

 

[Lila13]

My mother's excuse whenever anyone tried to encourage her to plan was that with her weak heart she was going to drop dead before she reached that stage.
But doctors kept saying there was nothing wrong with her heart.

She didn't want me living with her but she wanted me on tap. Well, I know I'm not going to have anyone on tap.

Lila

 

[Tressa]

Thank you

Thanks for all the views and opinions, unfortunately none of it has helped, sorry. At the end of the day I have to make the decisions. I know I am in Belgium but i have refused to give up the reins as such. Some think I have no right to say what should and shouldnt happen to my mum, I looked after her for over 10 years, even before she had AD. I am 36 and i wanted some sort of a life but that didnt mean i stopped caring. She always told me not to put her in a home, even when I was a child she told me that and I cant forget it. She is like so many mothers that i have read about, she is stubborn, opinionated and firmly believes there is nothing wrong with her, she even refuses to believe she is old. And she depends on me to do the right thing for her and I know in my heart that putting her into a home now is not the right thing. But I am mentally exhausted, I have battled so many years with my guilt and have battled to keep her out of a home but i feel I am losing it because nobody agrees with me, i have no say now because I "******** off to Belgium". I am no saint, i admit I wanted a life and i knew i would never have it there because they just left me to it and got on with their own miserable existences. And trust me they dont have busy lives or children to look after, most of their children are grown up, and they only have part time jobs but they always have some excuse as to why they cant spare as much as an hour a week to visit my mum. I could ramble for hours but it doesnt change anything, it only gives me a sore head.

Thank you again for all the opinions and advice, but at the end of the day we are all on our own when it comes to making decisions were this bloody awful disease is concerned. So I guess its time for me to be on my own.

Thanks again.

 

[Helena]

Tressa your Mother is just the same as mine ........stubborn ,opinionated, refuses to accept somethings wrong although does admit she is old even tells people she is 100
However without doubt her aggression is such that even care home staff will have problems with her and just a few hours with her and my head is bursting ..so much so i am really not fit for the 2.5 hr drive home

You are too young to tie yourself up furthur .....you have devotted 10 years to caring for your Mum

It truly is time for others to shoulder that burden and release your guilt monkey

None of us probably want to go into a home but we have to face that ultimately unless we are allowed to choose euthanasia there may be no other option

 

[noelphobic]

Tressa this is obviously causing you a great deal of heartache and I am sure everyone here feels for you, as do I. However, there is nothing you can realistically do to make other people do their fair share as far as looking after your mother is concerned. I do have some idea of how this is as I have a brother who very rarely sees my mother even though he has no valid reason not to.

I hope you will stay on the list as I am sure it would be helpful for you.