Never thought youre life would end this way Dad.

[karen1]

I have just joined this chat site and think its fantastic that you can share your experiences, thoughts etc.
My dad was diagnosed with MND in Feb, he was a very healthy man he was young at heart and was loved by everyone, we watched our dad, grandad, partner, deteriorate as the weeks went by and were devastated at the changes through out these weeks, he couldnt speak, move any muscles at all, couldnt eat or drink, he had to communicate via a letter chart, which was so frustrating for himself and for us too, everytime i looked at him i filled up with tears and on occasions had to leave the room, as i didnt want him to see me cry, his grandsons were devastated, and the youngest one, age 14 couldnt even visit for approx 3 months, we had to tell him after a few months that it would be best to see his grandad as he would regret it if anything unexpected happened, so he did, but got very upset, this made my dad upset, and to see your dad cry is heartbreaking.
All i could think was.. why him, why this person who loved life, who went walking, who ate properly but i know it doesnt matter how much you look after yourself, if you get MND then you get it.
As the months went by he wanted to end it all, and he did mention it on occasions, to us and to his carers, but we just tried to stay strong, even though we knew he wouldnt have wanted to suffer, and he had also requested that if he was ever very ill..ie.. on a ventalator then he would want it switching off, as many people would request themselves.
At the beginning of Oct it was very bad the muscle he had had wasted away, he looked gaunt, fed up, a man really who you could tell didnt want to be here. One night his feeding tube got blocked and so was taken to hospital, just to get it unblocked, so a routine job really, but he wen down hill, he got pneaumonia, but it got better within hours so i was elated, to cut a long story short, he ended it himslf after i had gone home and he was in the room with Barbera, his partner and soul mate, he had come to the end and bless him he wanted 10 quality mins with her, he then closed his brain down him self, but his heart carried on beating, the nurse said it was the second time in 40 years that she ahd seen this happen, devastation doesnt cover it, i screamed so loudly when i found out, i just want my dad back the way he was, a lovely, happy giving funny man, he didnt deserve this, how scarey it must have been for him, i cant get my head round it all, even when i look at his photos its so wierd, like he could just pop round, anyway ive gone on enough, thanks for reading this, i will just go and mop my tears up.


KAREN:sad:

[paleshia]

oh Karen, i am so sorry for your loss. tell us your favorite thing about your dad

[karen1]

The funny side of him, the walks we had especially when my nephews came out with us, his grandsons, i cant type at the moment due to all my tears, blimey, i need a tissue... its awful, absolutley awful he passed 2 weeks ago, and its coming towards Xmas so we wont see him, just hope that he is happy and that he isnt alone, if only we could find out or get a sign off him, i need to know hes ok.

[thelma313]

Karen, I am so sorry. Reading your words, it's obvious how much you love your dad and he sounds like a great guy. I am sorry for your loss. Please accept my deepest sympathies and know that he is in a better place and his spirit is free.

[Anastasia]

I feel so deeply for you and your loved ones Karen and wish you peace and YOU TIME now as you all try to go on with out your much loved Father. Take care and remember how fortunate you have been to have had him in your life and to have you memories of when he was well.
Go well,Anastasia.

[joelc]

Sorry about your dad! Peace be with you.

[KeeKer]

So sorry about you dad, please give my sympathies to your family. Try to remember the happy times you had. It will get easier, it won't stop hurting, but it will get easier.
Colleen

[BarryG]

Karen, I am sorry about your dad. Please accept my sympathies for your loss.

[Zaphoon]

Karen,

Thanks for being there for your dad. Please accept my condolences.

[tdamess]

the pain and loss you feel will ease , you will never forget but, you will be able someday be able to talk about him and smile , remembering him with a heart full of love and pride and funny stories about him... so all i can tell you is it will ease , my thoughts are with you and many others in this heartbreak

[DebbieR]

Karen
I am so sorry for the loss of your dad. It's obvious that you loved him very much.

[handinhand]

Hi Karen, I am so sorry for your loss. It is so hard to lose our loved ones. I worry so much for my husband and children. I want to make this as easy as I can for them.. I also want them to remember me happy and fun and and full of life. Not to dwell on the last days of my life. I want them to wear bight colors to my funeral and then go on a picnic at the park... I think your Dad is very close to you and knows how you feel. I pray that God will will comfort you and your family at this time. Hugs, Linda

[sharona]

Hi Karen,
My sympathies go to you & your family. Just know that if your Dad believed in the Lord the minute he closed his eyes here, he opened them in heaven,no more pain & suffering,people say it gets easier I personally think it just gets different.I lost my only child in 2003 he was 43 & I still miss him everyday.keep you dad's memories alive, talk about him,remember all the good times.God Bless all.
Sharon

[dldred]

Karen, my thoughts and prayers are with you and I know your Dad will let you know he is at peace and no longer in pain. Someday when you least expect it something will happen and you will say okay Dad I know you are with me.

Dana

[froggy102]

Hi karen, a fellow Notherner here from Manchester. Am so sorry and know every bit of the hell you have been through. I am in month 5 since my dad died, its gets SLIGHTLY easier some days, honestly it does. I too saw things i never wanted to see about my dad, unimaginable to the funny, lively, strong man as your dad was. It sucks! Sending thoughts your way. We will never know why our dads got this awful disease

[Why my Dad]

I'm so sorry to hear about your father Karen. My Dad is 82 and just diagnosed with ALS in Oct/09. Our family doctor had diagnosed him as having a stroke about 5 years ago. Last spring he had to have a permanent cathater inserted and - as his legs were getting weak and he was having trouble talking and swallowing...we requested some in-home care. A speech therapist and physiotherapist came in - as well as a nurse who replaces his cathater once a month. I had been advised to contact the Geriatric Clinic at the hospital to have Dad assessed as well. Thank God for these nurses as they were the ones who told us that they didn't believe Dad had a stroke - they believed he had a neurological problem and advised us to see a neurologist. My Dad has really been depressed since he was given the diagnosis. His legs have become so weak he can no longer walk on his own. I have to help him with all personal care until we are able to get assistance with home care again (there is a waiting list). Dad was choking on his food but I am still learning what he can and can't eat. I have been giving him Ensure twice a day as he has always been one who would only eat at dinnertime. He feels as if he can't clear his throat sometimes...but in the last couple of nights, he has been up off and on all night making noises as if he is trying to clear his throat. It is as if mucous is there and he can't move it. He gets flushed and ends up being short of breath. I have called the casemanager for CCAC (in home care) to see if a nurse can come more often to check his breathing as the nurse who comes once a month only changes his cathater. It is so scary being here with him and not knowing what to do to help him. An Occupational Therapist came today and is going to have some bars installed so that he can help to lift himself better as it is too hard for me to move him. It is the unknown that is so scary for me - and it is for Dad too. It is such a horrible, horrible disease for people to have to live through. I just hope I can stay strong enough to care for him. He has always been the strength of our family. Everyone loves him. I don't know why MY Dad had to get this awful disease. I feel helpless and pretty alone in this. I have just joined this chat group and read this discussion so I can understand how terrible it must have been for you to lose your Dad. Again - I'm so sorry and I can only hope that your pain eases in time.
Dianne

[GlenBrittle]

Hi Diane,

Welcome to the site. As you have already seen , this site is full of helpful caring people , with firsthand knowledge of the issues that we see.

I too, have in home care from the CCAC. I get a nurse every Wednesday. Call your case manager and tell them to increase the nurses visits . Also , if he is having trouble swallowing there is no time like the present to get a PEG put in. HINT: Get the surgeon to order in home care to get the nurses in to check the peg site ;)

Yes , its a devastating disease, and we are here to answers any questions you may have.

Glen

[Why my Dad]

I'm so sorry for your loss Karen. I understand how terribly difficult it must be for you at this time as my Dad is my world...and I can't bear the thought of losing him. I live with my Dad - moved in almost 8 years ago when my Mom was diagnosed with cancer so I could help out. Mom passed away on Oct 25/06 and my mind still won't accept that she is gone. Dad is 82 and just recently diagnosed with Bulbar ALS. He's been having problems with his legs for about 4 years now - then his speech became affected about 2 yrs ago and then swallowing. He had been mis-diagnosed as having a stroke about 5 years ago and it was a casemanager for home care that recognized he had a neurological problem from listening to him talk. It has been devastating news for the whole family and has everyone on edge. Dad is our strength...he is the link that binds us together. He is now unable to walk at all and shows increasing difficulty with swallowing. The neurologist told him that people usually "pass" from pnemonia - and now Dad is worried that he can't cough "right"...that something isn't working. I feel so helpless and even now...I understand how hard it must have been for you to watch your Dad become a different person. I see the change in my Dad already. He no longer makes jokes...he is depressed and sits worrying a lot. Oh how I wish there was something that could be done to end this disease! You are in my prayers Karen - please know that I feel your pain.

Dianne

[brooksea]

Karen,

Very sorry for the loss of your dad.