What an awful illness is that!

Anyone has experience with it and how did you handle it?

Totally awful.

My grandad has it. He was diagnosed with Parkinsons Disease about 15 years ago - Dementia ususlly comes with it - and we've had to watch him slowly change and deteriorate over the years
He is now in a nursing home because my Nana can no longer care for him at home.

He turned 80 this year - we never thought he'd make it cos he was so poorly last year. I make sure I visit him at least once a week. Other people in my family don't like to visit him because they can't stand to see him how he is - which personally, really pisses me off. I put aside my own emotions to see him. sure it's upsetting but if it was me, I'd want people I love to still visit.
At the moment he still recognises people, but i'm dreading the day I go to see him and he doesn't know who I am.

My grandmother

she had been "ditzy" for years.
argued black and blue with my husband on Xmas day a few yrs back that her chihuaha was only 7 years old.
the dog had belonged to my pop, who had passed away over 10 years earlier!

Little things she'd get confused with, and brush it off, "oh, i knew that!", or "thats what i meant to say.

When she stated to wander the street, waiting for her kids to come home from school (im her eldest grand kid and im 39), talk to my uncle like he was still at school, and keep asking when "Tiny" (my pop) was coming home, it was time the hard decision to put her into care was made

My uncle was her primary carer, and couldnt watch her 24/7- she'd get up in the middle of night and get ready to go out, when she wasnt due to go anywhere


Earlier this year, she had a fall (fractured her spine), had pneumonia and then fell and broke her hip..in the space of 2 weeks!!!

The day she after she broke her hip, she kept telling me every 10-15 minutes, "oh, my foot is sore" yes Nan, because you have a broken hip, and you are waiting for surgery.

A few days later, on a visit in the hospital, she had no idea who i was, kept telling me her son was down the hall

She just had another bout of pneumonia, and the ED sent her back to the nursing home, because it was familiar surroundings and they couldnt do anything more for her there than they could in the home

she is 79, and up til about 5 yrs ago, had more of asocial life than i do



sorry for the long rant

florescent said:

i must admit, i hadnt been to see my nan for a long time, the last time i visited her was 2 days b4 her last bout of pneumonia, and apart from not knowing who me or my mother (her daughter "say hello to your mum and kids for me" ) were she seemed in good health.


it is so hard.

I used to work in a Clinical Research office.
The main studies that we conducted were Alzheimer's & Dementia related.
I had to do testing and assist during procedures on the subjects.
They had to be in our office with the caregivers for the entire day for all of their visits.
It was so heartbreaking to see the effects on the caregivers/family/spouses.

A co-worker from that office ended up being diagnosed with Dementia at age 53. We were really close friends & neighbours. We all noticed that she was having a lot of "blonde moments" but no one realised that anything serious was going on until it was too late.
She slipped very quickly and by the age of 55 she could no longer write, dial a phone or have a conversation more than a few words.It was so sad because her mother that was in her late 70's had to be her caregiver.

Yesterday I watched a program with a women that was diganosed at 53 yrs old and her husband had to retire to be her full time caregiver.

Statistically, Dementia & Alzheimer's affects more women than men.
Both are diseases that need to be caught and medicated early to help slow the progression.

MrsMdiver said:

my main worry is becoming a burdon on my family...especially Ben

prb said:

It is a scary thing to think about. Hopefully with all of the research that is going on these days, they will find more ways to control these diseases or even prevent them.
The dr that owned our research center has been doing research on the diseases for over 20 years now. They are thinking it is tied to hormones.
maybe they will figure it out soon.

MrsMdiver said:

lets hope so

Thank you all for your comments

I know it's a 'heavy' subject but I realy appreciate your contributions

prb said:

To be totally honest with you, I think when he gets to the stage where he doesn't know who anyone is, I'll not want to visit so often.

I only had to deal with Dementia once. One of my good friends had it before he passed. It's really hard.


I wish you all the strength in the world darling.

I'm almost 100% positive my Mother suffers from this and I'm the only person in my family to recognize it...

Going into yr 9ish with my Mom's Dementia & Alzheimers ~ I take care of her 5 days a week normally ... to give my Dad the breaks he needs/deserves


It's a terrible experience BUT after the 1st couple yrs I had to teach myself and learn to embrace the good ( the other way was killing me ) and to know in my heart that no mater how hard it was - it COULD be worse ... and IT"S fucking hard as hell people

Mach said:

seriously...

prb said:

Michael and I have already had our discussuions on it
he knows how I feel and what I want and do not want for him or our children and I know how he feels

it can and does happen to anyone ~ coupls should talk about it

Again thank you all for your responses

Diabetes is the bitch in my family. Took both grandmothers, and my dad has it (but he controls it, unlike either of my grandmothers, although one was much better as it than the one who ate chocolates from her night stand until the day she died, knowing better). I made the decision....I'm just not going out like that.

Sorry to hear about the dementia. It has to be frustrating, and incredibly taxing.

Mach said:

Caregivers have it hard with these two diseases especially.You are a great daughter for giving your dad a break.

I worked as a social worker with hospice for 2 years and the majority of my patients would experience some form of dementia. It especially gets hard on caregivers and family members when it begins to reach the late stages of the disease. There are programs out there that are designed to offer respite services to families/caregivers from anywhere of five days to 2 weeks. I even heard of one program (can't remember now as it wasn't offered in our state) in which they would offer a month of respite services. Also if anyone needs assistance with caregiving for anyone with Alzheimer's or dementia related illnesses, the Alzheimer's association offers vouchers for respite. They give a certain amount per year and that money can be used to pay for someone to come into the home and help care for the individual with dementia.

It really gets hard on families when they forget who family members are, because the family member has all of these wonderful memories of times spent with the one with dementia, has all of this love for their family member, and it's hard to come to an acceptance that the family member with dementia just has none of those memories anymore. It's like this person is such a huge part of your life, and you are such a huge part of their life as well, but somehow (as one daughter verbalized it to me) "suddenly you feel as though you are a non-entity, because all of the years, all of the times shared, they no longer exist except within your own mind, but you've been totally erased from their mind." As I told her, love can never be erased. They may not remember the times shared, or things said, but they can still feel the love you give to them.

AndGodCreatedMe said:

florescent said:

that is hard to admit, my last visit was the first one id made in her new home, her last one was emergency care

prb said:

my grandmother spend 2 weeks there and it was horrible to watch her staying between people that were far more 'gone' than she was

for now i deceided to visit her as much as I can since she still knows who I am but who knows what I will do when she's getting worse.

I wish everyone that have to deal with this all strenght you need

As you know Petra, my grandmother has Alzheimer's. It is very hard seeing her be mean to people and it hurts that she doesn't remember my visits from one time to the next. But for now, she still remembers most of our names and is still in relatively good health.

My love and prayers go to you and you family.

My Aunt had it in the last years of her life. It caused a LOT of drama in the fam. God bless her, she couldn't remember my name. She'd call me Marge quite often and it sort of upset me. (Marge is my deceased mother's name.) She accused people in the family of stealing, etc. It started out with my dad and I. And the fam turned against us for years. Then when it happened to them, the song and dance changed. My aunt was a sweet sweet lady, though. We just didn't get her diagnosed until it was way too late.

My gramma Ellen has the early stages of it. Her memory isn't that great with certain topics--basically short term things. She tends to repeat stories of her life over and over. But since I actually like the stories, I don't mind. And since she raised me like one of her own, I'm just happy to hear her speaking so fluently. She's taking Aracept to slow down the memory loss. It appears to be working. She's always been sort of sharp to begin with. But before we had her diagnosed, we went thru a lot of hardship. Yelling, arguments, and her sort of putting herself in harm's way. I stopped what I was doing (college) because I became afraid to leave the house with her alone. She lives in TN with my aunt, currently. Happy as a clam and just as chattery and bubbly. I bought her 100 pieces of embroidery thread, so...yeah....she'll be nice and busy and happy for a while.

I'm just glad we took the harsh lessons of my aunt who passed on and made sure to pay very close attention to grandma. I would have hated to see her go through what my aunt did. And since she's stronger than my aunt (Seriously, she has the grip of a bear and the bite of a dog!) she could have done some damage to us or herself.

I've been in the dramatic place many of you guys have been in. It's so painful and I'm not ashamed to say there were many nights all I could do was cry or stew in anger. But love overcame it. Love and prayer.

My heart goes out to all of you who are in the storm, out of it, etc. It's a long battle.

LadyLuvSexxy said:

I am sorry for the loss of your aunt.

LadyLuvSexxy said:

I love you and am sorry you are going through this. It seems horribly unfair that the body outlives the mental capacities.