I feel so useless, the end seems frighteningly close now - Page 2

froggy102 · 03-16-2009, 08:29 AM

thank you! sorry, can only check when at lunch at work. Mum going to finally ring MND people. altho dad seems to have another chest problem so may not be coming home afterall. Don't know how we get personal emails here?

my dad wrote on his pad he is frightened about coming home. all so sad. this board is amazing though, so many people going through the same thing, which is sad in itself I guess. At least its a lovely sunny day in London!

feeling helpless, let me know what happens

Connies baby - my dad got a talking machine and just looked at it (he also has bulbar), we all had good fun making it say rude words but he wasn't interested. We also got him a big white board and a marker pen, but he didn't like that either. we found the only thing he will use if just a spiral pad, like a notebook, and a regular pen, he will write things down on that when he has to.

DeReb1 · 03-16-2009, 09:39 PM

hi
my husband had a dynovox which could have helped him to be understood, but even though he was a computer industry manager, he was so depressed, he would not use it. since he eventually lost use of his hands as well, we tried special attachments to the computer, but he was just too frustrated because it took too long to get out what he wanted to say. anyway, we had lots of success with a large printed alphabet board that we got from the local als association office. we would point to letters, and he would let us know when we were on the right track. you could make up something similar on the computer with a very large font. since my husband lost use of his hands, he had to blink when we got to a letter. it made things a little quicker, because of course you would start to guess at what he was spelling out. the interaction was good for him i think, too. as for the feeding tube, and the bipap, as well as the vent, my husband made these decisions before the need was evident, and i asked him at least once a week if he changed his mind, but the answer was always "no" as for the swallowing, a speech therapist showed my husband to tuck his chin to his chest as he swallowed, as this made the flap in the back of the throat cover the wind pipe, making it more difficult to inhale food into the lungs. it was helpful. also, since my husband refused to eat anything that resembled baby food, I added gravy or a type of sauce to his meals when it was possible, making it easier for him to manage. the therapist also told us that more than 45 minutes for a meal was pointless, since it wastes more calories than he could take in. that means lots of malteds and ice cream, and fatty foods for the calories it will add. sorry if i run on....it makes me feel better to be able to share this with someone who it might help.....otherwise i feel like a wealth of useless information with no where for it to go.....

froggy102 · 03-19-2009, 04:43 PM

hello all

sorry for not posting, am at home in manchester and have rubbish internet connection.

feeling helpless - glad you are having some progress

my dad in the hosp still, him in agony with constipation, is awful to see. we still had a laugh though. the man in the bed next to him has this hacking cough and we were laughing about it. can't write more as internet so slow. thinking of all of you. it helps to know me and my family are not alone.

am just showing my mum the board and saying 'see mum, it's not just us in this rubbishness'

xxxx

feeling helpless · 03-25-2009, 01:35 PM

Couldn't agree more... Dad is hanging in there... stubborn as ever and it would seem our method of coping is fairly similar. Laughter is a wonderful drug in itself, but unfortunatly poses it's own probs these days. Dad is very emotional last two days , he refuses to see anyone or let them come up and see him except family ie, me, my wife and my two boys. My son made him a card the other day very bright and cheerful and a little prayer inside... It said " I love you very much and I will always remember you in my dreams " Out of the mouths of babes eh.. he said in one sentence what we all want to say but dont want to for fear of sounding gloomy etc, but typical youngster broke the ice by saying " I didnt write 'amen' coz you dont go to a catholic school like me grandad !!" We all fell about laughing, since then it's broken the mould, we know he hasnt long and everyday is like a rollercoaster.. its ups are great to hold onto and the lows make you feel sad, upset, angry and soo useless. We have now reached the stage where he is so desperate for the end to come to rid him of the daily trials that he's beginning to give in too the small things and to accept help, ie using the hospital bed etc. Unfortunatly he cant breath when it is in the sit up positions cause it presses down on whats left of his diaphragm and he cant breathe. But he cant lay down either so he panics. Crumbs this disease is awful... i will keep you posted but we spend so much time at dads now we dont have much time at home to turn the computer on. This forum has been so good for us..

froggy102 · 03-26-2009, 10:48 AM

hello! sorry, was at home again and have rubbish 3 card! How are things FH? Hope you are OK, well, as OK as you can be. I had a ncie few days at home. Went to see dad in hosp, he is sooo skinny. As awful as it is, we still had some laughs. Mum and I were pressing buttons on his electric bed to make it move and he was really laughing! Funny how in all this dispair you can still laugh. When I look in his eyes though, he's still my dad, know what I mean. Freaks me out to think that he won't be here, where will he be? Am lasped Catholic so not feeling much faith at the moment. He is allegedly coming home next week which will bring a whole new load of challenges and trauma. I've been thinking about you so let me know you are OK.

Hope everyone else is coping as best they can today

feeling helpless · 03-28-2009, 04:24 PM

Glad you can still have some laughs. Sometimes it's the only way to get round a crap situation. Dad now having problems with swallowing, and not just when he's eating or drinking, has spoken with his district nurse about going onto the sedation drugs soon.

His book has just been published and to be honest i think thats all he was waiting for. It has kept him occupied for nearly two years now, so we are really pleased he managed to see the finished article. Good luck with your dad, and keep smiling it's the best medicine