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 Posted: Wed Apr 23, 2008 8:23 pm
I thought it'd be a good idea to create a thread where everyone can share their personal stories whether they are dealing with a disease themselves, or whether it is a loved one (Friend, parent, grand-parent, sibling, cousin, aunt, uncle etc.)
This thread can just be to get your feelings out, or to look for support.
Rules
arrow No flaming
arrow Be kind and respectful to all posters
arrow Don't be cold hearted
arrow Treat the topics of discussion with care
arrow Offer support if you can
My story
My grandfather was diagnosed in March 2006 with ALS (Amyotrophic Lateral Sclerosis). I was just about to turn 14 at the time so I was still a little bit around the younger child age. This news hit me really hard and I didn't know how to deal with it. My dad had told me that people with ALS tended to live anywhere between 3 to 5 years so he told me that my grandfather had lots of time.
In the past we'd visited my grandfather twice a year, along with the rest of my dad's side of the family. But since my grampa got sick, we'd started visiting every two weeks or so. Three weeks was the limit. So every two to three weeks we'd make a 4 and a half hour drive to visit him. The first time we'd visited him after he got sick, he had what we call "Canadian Crutches." and soon progressed to a walker within a few months.
The year he got sick was the year my parents split up as well. It was a hard year, so along with barely seeing my grampa, I didn't see my father very often either (We didn't get along at the time.) So we continued to visit him as often as we could.
In the summer of 2006. July 2006 to be exact, my grandfather had a stroke. My dad wanted to leave me at home, but I refused to stay behind in case anything happened. My grandfather was released out of the hospital two days after the stroke. At this point I believe he was in a wheelchair.
We go the rest of the summer visiting often, staying longer cause there was no school. Christmas rolls around, and since my parents are now seperated and my mom is working on Christmas my dad decides to take me and my brother to spend Christmas in Quebec with his family (his sister and everyone else including my grandfather.)
That year we had Christmas dinner at my grandfather's place. Well his girlfriend's place. It was the most emotional Christmas I'd ever had, at this point my grandfather was in a wheelchair and had a breathing machine/mask because he was beginning to get so weak. Myself, my dad (although he tried not to show it), my aunt, my cousins, everyone was crying because we came to the realization that it would be my grampa's last Christmas.
New years rolls around and about a week into the year my grampa is admitted into an old person's. A week after his admittance, he was diagnosed with pneumonia, which is actually common when a person has ALS, and normally results in death. So he was sent to the hospital so they could treat it and hopefully save him. Thankfully they did. So from January 2007 until his dying day, my grandfather was in the hospital.
We continued to visit him alot, but he started becoming so weak that it got to a point that when we went to visit him I would have to help him with simple things such as cutting up his lunch/dinner so he could eat, open the milk carton, mix his coffee for him. It was very hard for me to do, but I was glad I could do something to help.
I spent my birthday with my grandfather as well. In March 2007 when I turned 15 my dad took me to spend the evening with him at the hospital. It won't matter what gift anyone ever gives me. That was the best present anyone has ever given me. I just sat by his bed and held his hand just talking, spending time together, as lame as it sounds, it was great.
Wow this is hard to talk about.
So nothing too eventful happens until around May when my dad moves down closer to where my grandfather is for his work, so the visits to my grandfather weren't as often, and he didn't have much time left.
He was getting weaker and weaker, and by June he could barely speak anymore, could barely go 5 minutes without his breathing mask, and they had to feed him through a tube because it was too dangerous for him to eat incase he choked on it.
He was supposed to get a surgery to put a tube in his stomach, but decided against it because he didn't want to suffer anymore. None of us wanted him to suffer.
I saw him two days before he died. I remember when we were leaving, I kissed him on the forehead like I always did and said "We love you a lot Grampa, we'll see you soon." The next time I saw him, he was in a casket at his wake.
I remember the day it happened. My dad woke us up. It was around 9am.. and he sat us on the couch (me and my brother) put his arm around us and said "Kids, grampa passed away this morning at 7am, but at least he's not suffering anymore."
And that was it. A year and a half of slowly watch my grandfather inch towards his death. June 28th 2007, Grand-papa Andre passed away.
It was really hard. And I didn't deal with it well. The first week I never stopped crying, and when I came back from my dad's, the first two weeks of summer break I wouldn't talk to anyone, i just stayed in my room. It's been almost 10 months since then, and I'm slowly accepting it.
Please share your stories and I thank you for listening to mine.
R.I.P Grand-papa Je t'aime, et je vais toujours t'aime
(R.I.P Grampa, I love you and I always will<3)
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Posted: Sat Apr 26, 2008 9:21 am
Hey MG,
First, welcome to the Guild ^_^ And thank you very much for sharing your story. It really brought tears to my eyes when I read it because so much of it echoed my family's experiences.
My Grandad, Alan, was always really active. My Dad says he was the perfect advert for retirement, he cycled, went shooting, looked after cars, and was a brilliant father, grandfather and friend to many people. If you needed your gas boiler looking at or couldn't switch off your burglar alarm you could just give my Grandad a call and he'd be right round with a load of tools, ready to fix things. He liked solving technical problems, and he liked to make things. He made a little bird table for me when I was 5 so I could put bread crumbs out for the birds in my garden, he made a toy fort for my brother, and a doll's bed for my sisters.
But he started to notice that he couldn't move as well as he used to. So he went to a doctor who said it was osteoporosis, very common in guys his age, and he was given some calcium tablets and sent to a physiotherapist. But it didn't work. At first the doctor tried to fob him off and said he wasn't doing the exercise he had been told to do, but my Grandad knew it was something more, so he went to his GP who referred him to the local hospital.
It took about 2 months of tests to work out what was wrong, MRI, CAT scan, blood tests, you name it my Grandad probably had it. In the end he was told they were 98% certain it was Motor Neurone Disease, with the other 2% being myscular dystrophy. We had already been told that it was a distinct possibility, but I still remember how shocked I was when my Dad phoned to tell me. I remember it was a Saturday, I was in my second year of university, sitting in the room of my student house when I got the call. And after I hung up I just burst in to tears. I had really, really been hoping it would be something else, anything else.
My Grandad sold his guns to the shooting club he was a member of, as it was the safest way to get rid of them. He continued driving for as long as possible but he had trouble getting in and out of the car so half the time he would just sit in it while my Nan did the shopping. Eventually he was told he couldn't drive any more so he had to sell one of his cars, a lovely BMW, to my uncle (my Dad didn't want it).
We also started to visit more often. I was younger we saw them every other month, my Grandparents were members of lots of clubs and it was a 3 hour drive down to see them so before it wasn't practical. But knowing that he was now on "borrowed time" spurred us in to action. Luckily my university is along the route to their house so I was picked up and dropped off and never missed out. He was put on some drug that slowed the symptoms but damages your liver at the same time, I clearly remember my Dad saying that he hoped my Grandad would die of something else in the mean time, anything to stop him being killed by MND.
My Nan was really amazing. She became a full time carer and I don't think I ever heard her complain once. She gave up so much to look after him, she used to do loads of volunteer work and attend lots of clubs, bowls, Women's Institute, helping out at the local school. Luckily the Motor Neurone Diease association found some volunteer carers, they came and helped my Grandad for an hour in the morning and an hour in the evening, and for two hours twice a week so my Nan could do the food shopping and still help down at the school. A year later my Dad and aunt took over caring for my Grandad for a week so my Nan could have a well-deserved holiday in Italy.
Each time we went to visit, something had changed, a stair lift, a wheelchair, special cushions in my Grandad’s favourite chair because he back muscles couldn’t support him properly. He was told to have a feeding tube inserted in to his stomach and he told the doctor to go to hell, instead he had a nutritionist and my Dad dug out our blender and gave it to my Grandparents so my Nan could make smoothies for him. He really liked food, ham, egg and chips, sticky toffee pudding, chocolate, if you could have put any of those things in a blender for him we would have done. He also had the breathing apparatus but it was more for when he went to bed as he couldn’t breathe properly lying down, when he was sitting up he was better. He also looked different every time, weaker, thinner, older, he was 78 going on 98. He could still speak but it was with some difficulty, and some times I had trouble understanding what he was saying.
The last time I saw him was in October 2006. As we left I wondered if it would be the last time I would see him, but I persuaded myself that we would visit before Christmas. I turned 21 on 13th November, we had a family party in London, but my Grandparent’s couldn’t go, my Grandad was too weak to make the trip and my Nan didn’t want to put him in a care home for the weekend. I called them from the restaurant to thank them for my birthday present, they and my parents had given me a not insubstantial amount of money, and I was really touched. The plan was for me to buy a car with it so I told my Grandad over the phone that I would be needing his advice on what sporty little number to buy. But on the way home from London I calculated it in my head and realised I actually had enough to pay the tuition fees for a Master’s degree, so thought “sod the car” and decided to do that instead.
I never got to tell my Grandad that though. On Friday 24th November 2006 my Dad called to say he was down at my Grandparent’s place and would I like a lift home for the weekend? I jumped at the chance, even though my boyfriend was visiting. And when he got there my Dad said my Grandad had been taken in to hospital on Tuesday, he had been very delirious and wasn’t making any sense when talking to my Nan so the doctor had him moved to the hospital. On Thursday night one of the nurses was doing the rounds and asked if he wanted anything, he said “no thanks, I’m fine”. She went around the rest of the ward and when she got back to him, he had gone. Just like that. I’m glad those were his last words, I’d have hated for him to die while waiting for a cup of tea.
I think he was holding on just long enough to see me turn 21, and know that the family was okay. And once he knew, he was ready to go. I never got to tell him I was going to do a Master’s, and he never saw me graduate from my BA either. I think about him nearly every day, and miss him very much. I have a car that another uncle gave me, and there are several problems with it, and every time something goes wrong I want to pick up the phone and call him and ask him about it. I really want to sell it and have him help me find one that’s more reliable. And I can’t. He would have been 80 a few weeks ago. It’s been over a year since he passed away, and it feels like longer. My Nan was diagnosed with breast cancer back in October and I cried because I wanted my Grandad to be there to support her, drive her to the hospital and yell at the doctors if he felt they weren’t looking after her enough. She’s okay now, they think they caught it in time, but I still wish he had been there.
I’ve been crying while writing this, I have 3 very soggy tissues next to me. Nearly 18 months since he died, and I still cry about it like it was yesterday. Because it was just such a waste of his life, he really was a perfect advert for retirement, but he was also a perfect advert for exactly what MND does to you. His Mum managed to live well in to her 90’s, I think if he had been given that chance he could have made that quite easily.
But, as I have said many times before, I will make sure that his death by MND was not in vain. If you shout loudly enough you will change the world, and believe you me I have the lung capacity and vocal energy to make myself heard. This guild is just the start, although I’m afraid that for the time being my next idea will be a secret wink
RIP Grandad Alan.
xxxxxx
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Posted: Mon Apr 28, 2008 7:45 pm
Thanks for the welcome.
And thanks for your story, it was really touching, I actually started crying as well.
Actually now that I think about it.. today is 10 months since my grandfather passed away.
You're grandfather sounded like an amazing man and very much so like my grandfather, I always think to myself the good die young. My grampa would have turned 63 this november. He was 61 when he died.
But this is a great idea for a guild and it will be great to be able to support each other no matter how long ago our loss was.
R.I.P Grand-papa Andre.
Je t'aime<3
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Posted: Tue Jul 08, 2008 6:17 am
My story is pretty rough. I'll probably cry while writing it.
My Nanny, Ella, was one of my favorite people when I was younger. I spent countless hours at her house either after school waiting for mum to come and get me or just going to visit and playing in the sprinkler in her backyard.
She was the one who let me drink my first cup of tea. In the best teapot ever. She taught me a lot about baking and doing things for myself.
My Papa, Magnus, passed away in 1998. Everyone was destroyed. It was pretty sudden, I was young so I didn't quite understand, but it still hit me pretty hard. I still remember the day we spread his ashes in the river he always went fishing in.
After Papa passed away, Nanny slowly got worse. We eventually decided that her living in the house wasn't too great. She couldn't really care for the lawn and garden like she used to. So we moved her into an apartment close to where the house was. From there...it just got so much worse. I would go over to visit and find her dishes unclean and her garbages overflowing. Then, the fateful day came where she was brought in an ambulance to the hospital. She had had an allergic reaction to one of her medications. She took too many.
We decided it was time to place her in a home.
She was originally placed into a more "homey" home. That didn't go well at all...she was kicked out after about 3 months because the woman couldn't take care of her.
We began to realize what was happening to our loved one...She had altheimers. One of the most terrible things that could happen to a person.
But we didn't really realize how bad it could get.
After that home, we moved her into a home across town. It was the only one that had openings. It was really cramped and not too great. She got progressively worse. We could still take her out places, but it had to be a quick visit.
Then, the home couldn't house her altheimers anymore.. so she was kicked out again. This time we moved her into a home that had an actual ward for altheimer patients.
Once she got there, well, let's just say she can't really remember anything anymore.
I go to visit my once lively nanny and look at her straight in her empty eyes as she tells me she loves me. I feel a part of me break. She only says things like "I'm sorry" and that her father is dead. She's on depression medication and she has crazy mood swings. If she's having a bad day, we can't take her for a walk, she just cries the whole time.
It's sad because when we do take her for walks on good days, she'll dance.
She has this dance that she's done forever. "1,2,3,4,5,6,7,8,9,10 and a big fat hen" And I can't help but think that's the only thing I have left of my old Nan.
It's been torture for my family to go through all this. I have a really difficult time visiting her.
Some days I wish she would pass on. I know that sounds terrible, but it would cease her suffering as well as ours...I love her so much, and it pains me to see her in such a terrible condition...
I love you Nanny! <3
Thanks for reading.
What a wall of writing, sorry!
-Stamos
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Posted: Tue Jul 08, 2008 8:13 am
Hi Stamos.
What a sad story, how dreadful for your Nan to be moved from place to place. Some care homes really are nothing short of heartless and abysmal.
I know how you feel about sometimes wishing she would pass away. When my Grandad died I was sad, because I loved him and wished he was still around, but I also found that I was happy, because he wasn't suffering any more, and my family wouldn't have to watch him get worse.
*Big hugs*
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Posted: Wed Jul 09, 2008 7:42 pm
Thanks Akibe.
The care homes...): Such a horrible thing. I never understood why they kicked her out. Apparently she was too annoying because she cried a lot >_____>
*hugs back*
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