I feel so useless, the end seems frighteningly close now

[feeling helpless]

Hi there, I'm new to this and I need some help and support, all suggestions welcome as i am at a loss for ideas. Please excuse the length of this but felt i had to give full picture.
My Dad was diagnosed in Mar 2006, aged 65. He has always been an active man since a young lad so this seemed an unbelievable illness for him to get. Didn't seem real. Naturally, few months after diagnosis nothing had dramatically changed, his legs remained effected as well as the vasiculations and he would gradually show us muscle wasting away but remained determined to beat this thing. He started with rilotec very early on and is still taking it now. His breathing problems started a year ago and has gradually gone downhill. January his FVR was 36% which meant nothing to me but that was when i started looking at this forum to try and understand what it could mean ? Dad doesnt like talking about his mnd or the problems he faces and so i'm in the dark unless my step mum tells me anything.
Up until last week i still refused to believe he had this awful disease, or that he would die from it, but recent events would soon change that line of thinking.
He is panicking and frightened, something I have never seen in my dad. He talks about committing suicide but he's left it too late.
Four days ago, he had a fall, which left him a bit bruised and battered. We still managed to get him downstairs on the stairlift and he spent the day in his chair recovering. The following day he was exhausted, but again we managed to get him downstairs and into his chair. Yesterday, I got a call at 7am, he'd had a fall and step mum couldn't get him up. I went round straight away and helped get him downstairs , but this was the first time i realised how much he had gone downhill, and so quickly, it was quite upsetting and shocking. That night when I went up to help him upstairs to bed we very nearly didnt get him upstairs. His legs refused to move or do anything, his arms had lost all strength and it was clearly too much of an effort for him as i was holding a dead weight to transfer him from wheelchair to stairlift. ( the stairlift does not come down to the bottom of stairs as it goes round a corner and the first two steps have to be conquered independantly). He was angry, upset and aggitated, understandably.
I went up this morning to help him downstairs and he refused to come down. He says its not just the problems using the stairs, but his speech is almost gone, barely audible .. and he has problems forming words and sentences when he can talk. His breathing is very shallow and he can no longer cough, so he gets a build up of mucas. Swallowing is becoming impossible, and at times he can hardly hold a cup. His wife is at a loss she doesnt know what to doand is barely coping herself, but she doesnt want to 'share him' with anyone other than me (which is fine by me, but we will need extra help soon !).
The biggest prob is that he has made a living will and is already refusing any treatment. He will take his morphine and rilotec, and when needed a dispursant drug to help clear his throat, but thats it. No oxygen/bipap, nothing. His new wheelchair that was specially made for him complete with restraints came the other day and its going back... he tried it but as soon as he saw it i knew it would be going back.
It was so alarming and distressing to see him lying on his bed today unable to do anything and struggling to be comfortable. I feel so useless. I know he's giving up but I dont want him too. He's always been a fighter, but im worried he is giving up and that will be the end. The last four days have seen him decline dramatically and i'm worried we are now talking about weeks and no longer months, but i'm not ready for him to go yet. Help ! Any suggestions, how can i help him , what do i do ?

 

[joelc]

I am so sorry for what you are having to experience with you dad. All you can do if he refuses any devices to help him live is keep him as comfortable as possible and keep loving him. I am sorry he has chosen not to accept a BiPap or trache and vent as these things can make life very enjoyable.
If you have read some of my posts you will see that some people can still enjoying life with these helpful items. Could you get him to read about my experiences? My heart goes out to you!

 

[Danijela]

Hello there. I see you are based in the UK. Have you tried speaking to somebody from MND association? They can provide useful advice, loan equipment and put you in touch with local services. They also provide information for carers. I hope your dad decides to accept some help, but as Joel says if he refuses all you can do is be there for him. Wishing you all the best, Dani.

 

[Marjorie R. Wilcox]

My heart breaks for you. What can we say to help? If you could get a cough assist machine and maybe an antidepressant from the doctor. He seems willing to take meds. Then indeed maybe you could get him to consider joelc 's information on the feeding tube and the ventilator. Joelc and his wife are very special people, and they make everything sound within our reach. They are content with their situation... and I believe them when they say it's almost a snap to handle the ALS obstacles. If he can't be persuaded, then of course stay close by and show your love. We do care. Please let us know what is happening. Thank you for sharing with us. Marjorie and Rick

 

[hopingforthebest]

Dear Feeling Helpless:

So sorry. It seems that your father has made up his mind. Will pray for your broken heart during the next few weeks.

 

[andyvaughn]

Feeling helpless,
I mirror the other sentiments stated here. Your father has made his wishes known, however, some people change their minds at the 11th hour. You can always ask a couple of times a day if he would like to consider the vent/bipap. My husband succumbed to ALS 2/14 - he stated from the day of diagnosis until his passing that he did not wish to have a trach or use the bipap. I honored that decision, as it was his to make. But, that didn't stop me from asking on a regular basis if he didn't want to change his mind.
All of that being said, the best that can be done is to provide comfort. I suspect - based on what you've said, that the panic might be coming from his struggling to breath. With Jim I used ativan towards the end, then switched over to valium and morphine in the final days. Morphine actually opens up the airways, and has a sedating effect. The combination of morphine, valium and suctioning kept him comfortable and peaceful. There is no reason that it should be otherwise.
Andrea - wife of Pals Jim

 

[froggy102]

hello, I am also new here. It was your message that actually just made me sign up.

feeling helpless, we are in exactly the same sitch with my father. He gave up really the minute he was diagnosed (summer 07), would never consider wheelchair etc. He has been in hospital with chest infection but is coming out soon and we don't know how my mum will look after him in the house. There doesn't seem to be enough help available at all.

I live in London so let me know if you would like to chat. I don't know if this board lets you see people's personal emails but let me know if you want it. It sounds like our dads would have got on! and I know how seeing them suffer is beyond heartbreaking.

 

[feeling helpless]

Wow, Thank you for all your messages, I certainly didn't expect so many replies. Just to update you, dad refused to come down again today and has it firmly in his mind hes upstairs for good now. Refused morphine this morning but pursuaded him to take it midday. Even managed a few mouthfuls. Had a chat with step mum and i asked if i could have the number of our mnd nurse and phone for advice and a frank chat about recent situation without little ears pricking up and getting cross cause we phoned her.
We do have an mnd visitor which i set up for dad against his wishes at time via the mnd organisation. They are really good for everything to do with mnd... if you have a 'willing victim' so to speak !... and who regularly comes round for a chat and help with any equipment needed. She was the one who got our first borrowed electric chair.
Anyway, had a long chat with our mnd nurse and she said she wasnt surprised by what she heard and that she had been expecting this. Explained that she had offered him everything under the sun but he had refused point blank, but shes never given up offering each time she sees him. She has got to know him really well over the last 3 years so she knows what hes like, said she couldnt get round today but is coming tomoro, so with all three of us there we can put things clearly from everybodys point of view. Will let you know how we get on but she has told us that he could pass any day or in the next few weeks ( unable to give any better timescale) and to prepare for worst !
Thanks for advice on reading cds excellent idea seeing as jigsaw puzzles are out ! Sorry, terrible joke but its this warped sense of humour that has got all of us, inc dad, this far without getting sectioned into a mental institute.lol
Will let you know how visit goes tomoro
By the way would love to hear more from froggy 102 and how your story goes so far... plenty of support for mum on mnd organisation website , find the phone number local for you and give them a ring, they are great for everyone, doesnt have to be dad to begin with, just cause he doesnt want support doesnt mean you cant have any or your mum ! You should also have a card team that your neuro doc or gp can put you in touch with. write again soon ...
Thanks again everyone, so good to know we're not alone,

 

[Al]

Froggy and feeling helpless, you can't Private Message each other until you have more posts but if you'd like to send me one saying you want to exchange email I can send each other the others email you registered with or I might be able to make other arrangements.

AL.

 

[Flowerpot]

Al- you are such a star trying to help people - thank you

Kind regards

Flowerpot

 

[DeReb1]

spend time with him.....

no matter what you see with your eyes, you don't really see the struggle ALS patients deal with internally. you may think your dad is giving up....he's probably depressed...who wouldn't be? but he's probably trying to figure out what is going on with his body.....things we all take for granted have been taken from him, without warning....and he's scared....but that doesn't mean he's giving up......he's trying to figure out what is happening, and maybe he's in a bit of a panic.....try it yourself....if you try to sit still, and absolutely silent, for any length of time....it is difficult......now imagine if you don't have any control over it, and your nose itches, or you get a little saliva caught in the back of your throat.....only you can't do anything about it.....that's probably what he's up against. my husband lost his battle with ALS in october....he was a marine....and i had the same thoughts you do now...until i saw just how the illness can drag out....my husband wouldn''t have anything to help him breath, no feeding tube, and the first couple of months after he had that first major fall, he would have panic attacks, and fall out of bed, and i would have to call my brother in law in the middle of the night to come over to help me get him back into bed. my husband was in serious denial for a long time....but give up.....no way......after it finally became too much to get him upstairs (my house is set up much like you describe your dad's place) I finally set up the living room as our bedroom, which eventually began to resemble a hospital room, and I just changed things as it became necessary........believe me when i tell you.....everyone who knows what your dad has feels helpless......it's the nature of the beast, sort to speak.....but he might hang on a lot longer than you think........my husband was in hospice for two years. in the end, i prayed for god to put him out of his misery, rather than suffer another day. if your dad opens his eyes in the morning, he has not given up....and all you can do is be there for him. help him get comfortable, talk to him about what is going on with you, and tell him everyday just how much you love him. i would strongly recommend that you go to therapy as well, since this will take its toll on you, and you will want to work out your feelings there, so that when you see your dad, you can be with him, and enjoy that time with him. i will keep you in my prayers....i have two children, 21 & 24, who are in the same shoes you are in, and i know it is difficult. hug him, kiss him, laugh with him, and be with him, as much as you can......touch his face, his hands...make contact with him.....you will see that there is still a light in those eyes....and he will respond, and you will see for yourself that he has not given up.....if you need to talk.....please know that i am here for you.....good luck to all of you.....

 

[feeling helpless]

Thanks Al, sorry new to all this. Not sure I'm ready for anything too personal, its just that i've found it has helped so much just getting things off my chest and thought it might help froggy too. Dad has finally agreed to a small amount of help and agreed to hospice care at home . Just posted a question on mucas tho, any suggestions ?
Again thank you to everyone posting, you're all fantastic in your own little ways

 

[feeling helpless]

Sad day but productive...

As i said before,...A glimmer of hope today as we are now one step nearer to getting the help dad really needs. We sat down together today all four of us ( inc mnd nurse ) and had a really frank discussion. Nothing was covered over or painted rose coloured, i made sure of that. Not to be nasty but to show dad that we cant bear to see him suffer when he doesnt need too. He didnt like it very much, i suppose he sees it as a defeat, but its just the beginning. His nurse said he was very bad and to expect the worst, although couldnt give us a time scale, she was honest enough to say he could pass any day now due to a whole host of probs he now has. I think he appreciated her honesty ! We told him just because he was signing in agreement to hospice care it didnt mean he would lose control, and that he would always stay in control as long as poss, and after we would all respect what wishes he had informed us of.
Still insistant on staying in bed upstairs but mnd nurse has got him to agree to a hospital bed (upstairs if poss), pressure mattress meds in his neb and a total revamp of pain control etc. Very concerned about his feet, they are black but still warm to touch, shes worried about clots but again at least she knows everything now. It was the first time i had been invited ( prob due to the fact i phoned her) to sit in on a meeting with mnd nurse and i felt i actually achieved something today, if only small !
As i said, he wasnt happy but i think that was because he hoped it would never come to this, however i think he knows now that the end wont necessarily be painful or distressing and he now has a whole host of people on his side, supporting him. He knows he can be a grumpy git but he also realises how much we love him after our frank discussion today.. THanks for listening..will keep you posted

 

[DeeMichelle]

Hi
I'm so sorry for the situation you and your Dad are in. My Dad chose not to be PEG fed, which would have been the thing that kept him alive longer. At that point my brother and I went up and stayed with him that was the point in all of this when I felt the most useful.

I'm glad you've got the MND nurse a good one can help soooooo much and it's worth having the hospital bed just in case.

We did arrange for Carers- and if you go down this road at this stage this should come under Continuing Care in the UK and be paid for by by the Health Service not Social Services where you pay a contribution.

The Carers did not provide a great deal of care for Dad mostly I had already washed/changed him, but I still think it was good to have the back up and for sure my Mum couldn't have coped. Once we got over the initial embarrassment Dad appreciated me doing his personal care. I could not have done this without my brother helping with lifting and turning. So really think about what you all can and can't provide.

I always felt completely freaked out when he fell I do think the falls are one of the hardest things about MND/ALS- I really feel for you going in when he has fallen.

Be reassured that by going in and sticking by your Dad you really are doing something so important. In the end I listened to music with Dad and sometimes just sat very peacefully with him.

My Dad was very comfortable in the end and being at home, not hospital or hospice was important for him. It was a big achievement for us to just be able to carry out his wishes. My uncle who also had MND went into a hospice and they really made him comfortable and peaceful.

I truely wish you all the best. You are clearly doing all you can.

Dee

 

[ConniesBaby]

Dear Feeling Helpless,
Thank you for all of your posts. I have not been to the forum since October and have never really participated. Unfortunately, I am in a similar situation as yourself. My mother is 84 and has Progress Bulbar Palsy/ALS. I don't even remember how long it has been for her, but in the last few months she is deteriorating quickly. We were able to make out what she was saying on the phone, but now we are uable to at all. Even talking to her in person are almost impossible. She is still at hoe with my stepdad and has a stairlift in place. She falls a lot! We are not taking her to any doctors for this condition as my stepdad is in charge and he feels there's nothing they can do for her anyways. I spoke to him once about a feeding tube, just in preparation for the future and he said no. He said that she has her Health Care Proxy filled out saying that she will not have any artificial means of support. This was completed before this disease was diagnosed. I feel that if she knew what if could do for her, and that it is not just keeping you alive in a vegetative state, she might agree to it. She is still able to eat, but it seems to be getting difficult and she is losing weight. She also has bouts of choking. She does have a lot of drooling and is having more and more of a difficult time eating. I know that there is no treatment or cure, but I can't help but feel that I want to get her to more dr.'s in order to make her comfortable and to prepare for anything that may be coming. Thank you again for your posts, you gave me a lot to think about. Anyone have any good suggestion for me I would be extremely grateful. A big thing we need to get at this time is some way for her to communicate. Because of her age and what seems to be diminishing mental capacity, we need something simple to help her communicate. She cannot use something like a laptop computer. I had tried a Magna Doodle, where you write on the board and then pull the lever and erase. Unfortunately, this doesn't really work as she will write in script and tiny, so we don't know what she is saying anyways.

Thanks,
Regina