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Struggling with fathers decline

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    Struggling with fathers decline

    Hello everyone.

    First post for me, having just read a lot in the last few months.

    My father was diagnosed with MND (probably ALS) in November 2020. Since then he has drastically declined. He can no longer walk, barely speaks and has difficulty breathing and swallowing. Excess saliva/drooling etc. He has patches for this as well as a plethora of other meds for various symptom control.

    He doesn’t want to live any more and it is so hard to watch him slowly fading away. This time last year he was going on hour long walks to escape the lockdown boredom and has always been super fit. Played football well into his 50’s. He is now 67. So shocking how quickly things have progressed. It seems to come in catastrophic waves.

    He has been sleeping in his riser recliner chair for over a month as no longer manages the stairs to get to bed. This week a hospital bed arrived but he refuses to use it. We managed to get him into it but he was terrified. He said it is too large and he won’t be able to reposition himself in the night and would then need my mum to be there all night long. She needs her sleep too as she cares for him all day. So he insists on sleeping in the chair as he can move himself into a more comfortable position himself.

    I guess I am just off loading. So many emotions.

    Hello DeniseBC, first post always a hard one to do, I didn't post for months after I joined,

    does the bed have what they call a "Bed Lever" basically a static hand pull which will be attached to the bed in an appropriate place down the side? It allows for grabbing to get up or turning over in the night

    Husband Albert diagnosed PMA Feb 21


      Hello Denise. So sorry your dad has joined us. This disease is indeed the pits. Please don't let it take from you the happy days xx


        DeniseB-C Welcome to the group that no-one really wanted to join. Here you can say what you like and ask what you like, nothing is too silly or indeed out of bounds. The members of the group either have MND or are partners of someone who has MND. You will have seen from looking at the blog that there are very serious points raised and shared and also there is humour. One of the most important things is to be able to find something to laugh about. It's so important.

        There is no problem in off loading at all, it's very important and many of us do.

        May I just offer you a BIG hug which is often needed and I wish you great strength during this incredibly difficult time for you and your family.



          Hi Denise B-C
          Its a cruel disease that follows no particular pattern.Does your dad have a palliative care/ hospice team involved.?
          It sounds like a better sleeping arrangement needs to happen to suit your dad and your mom.
          Also he is so low in mood would he benefit from counselling and perhaps a look at medication to improve his

          It must be so stressful for him coping with breathing and swallowing problems and I was wondering if he has been seen recently by a respiratory team ?
          Hospice / palliative care teams usually work with people to try everything to improve symptom control and so make people more comfortable.
          Is it worth getting a review ASAP as these changes are clearly overwhelming him and you all right now.?
          I think in your dads position I would be relying on the palliative care team to get him more comfortable and aim to reduce his stress levels and aim to improve his mood.
          Of course it’s a horrible situation for you all.
          Really hope you get the help needed to ease the situation a little.
          Best wishes


            Hi all.

            thank you for the welcome.

            he does have a bed rail but his mobility is such that he cannot move himself whilst in the bed for it to be of much use. He told his OT today to arrange for collection of the bed as he will not use it. He was adamant. I think part of it may be that he is worried if he gets in it, he may never get out again!

            Palliative care team are involved. He has been offered counselling. Which he refused but he is taking anti depressant and the dosage has recently been increased.

            He has been seen by respiratory team about a month ago and has a NIV in the house. He uses it occasionally during the day at the moment. But it is very sporadic.

            His consultant has also referred him for PEG to be fitted but recent letter said this would be delayed until September due to COVID.

            I believe we may be entering the final stage. He has days where he is so agitated and it up and down in the riser recliner. Suffering terribly with leg cramps. Baclofen taken regularly to help.

            We all feel so helpless.


              DeniseB-C A warm welcome to the forum Denise, so sorry you’ve had to find us…

              It’s a very scary time for you all and, with your dad’s loss of speech and mobility, he’ll feel quite isolated and vulnerable too.

              Moving downstairs to sleep can be a huge psychological step. It’s one thing sleeping in an armchair, but sleeping in a bed, a hospital bed at that is a hard step - I’m going to be so bold as to suggest it may be as much a mental hurdle, as well as a physical issue… He obviously is not comfortable in his RR armchair, has he pressure relief cushions?

              His agitation maybe due to him being uncomfortable in the chair, his cramps etc and he needs to move. If it's worse from evening onwards, maybe it's restless leg syndrome.

              I agree with Mary in advising the involvement of a palliative care team or hospice - please don’t freak at the mention of a hospice, they're great resources for those living with a life-limiting condition, and can take an overview of your dad’s needs and symptoms.

              Do you know what his oxygen Sats are on his NIV? (a fingertip monitor doesn't cost much and is handy to have)

              Big hug to you.

              Love Ellie.

              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                Thank you Ellie.

                Yes his palliative care nurse came out with the OT yesterday when he told them he didn’t want to use the bed. They are ordering pressure cushions for him now due to that. I agree it could be a mental hurdle with the bed too. It’s like the final defeat almost. He may think that’s it then and he’ll be in it for good! He has totally given up and I just want him to be at peace now. All the fight has gone out of him.

                I don’t know his oxygen stats. What sort of fingertip monitor would you suggest for that please?


                  Look for Pulse Oximeter Fingertip Monitor online. Amazon have them (obvs!!) as do Boots etc. but I think you know who is cheaper... No need to spend much on one, mine was less than £15.

                  I'm sorry your dad is so down Denise, it must be heartbreaking for you to watch. If he isn't taking antidepressants, that's something to consider. xx
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                    Hello Denise, I'm so sorry your Dad is suffering with this terrible disease. My husband was also diagnosed last November, aged 59, and his ability to walk has deteriorated to quickly and now needs a wheelchair. I'm pretty new to all the care side of things so I'm sorry but I can't help with that side of things. I'm also new to this forum (yesterday) and I felt so much better today having read replies to my post. I hope you also find this site provides much emotional support as well as practical.


                      Hi Denise it’s a bit terrifying isn’t when you can see possible solutions but the other person doesn’t seem to want to know.
                      I’d like to share with you some of my experience having been in a similar situation.

                      Ann my wife passed at the end of October last year however like you I truly felt we were heading into the final stage in the December of 2019 however Ann clearly had other ideas because she got a bit of a second wind. I tell you this because the palliative team said no and they were right.
                      We tried hospital beds on three separate occasions each time Ann was not happy so we sent them back and she stayed in our own double bed with an air pump mattress ( Ellie will know the correct name ). Yes I was turning her every few hours every night but that was my choice. I could have had help a couple of nights per week from a local charity staffed by qualified nurses but we didn’t want that. It is worth talking with your hospice to see what’s available in your area. Eventually I did become a dab hand at being able to sleep in the same bed and turn Ann without getting out of bed or even waking up properly.

                      I guess your hospice / OT will have already talked to you the family about health care packages if not again really worth exploring.

                      Finally I felt exactly as you in that all I wanted was for Ann to be as comfortable and free from pain as possible.I have to say the hospice were brilliant and delivering this for over a year that they were involved.

                      I tend not to post much these days but if you ever need a chat just PM me any time.

                      Take care of each other…Phil


                        Hello Denise B-C

                        I can empathise with you, my Dad was diagnosed recently, he's 82, and he has lost weight very quickly. We are all concerned that he is struggling to cope with adapting to this. One minute he says yes e.g. hot water dispenser and thermal mugs to protect his hands from the heat of the cup. Next minute he is back to a china mug, although still using the dispenser...

                        All I can offer is a virtual hug and shoulder to cry on. This is a (insert expletive here) illness with what it takes away from your loved one. I am trying to get Dad to focus on what he can still do, not focus on what he can't do. But it is getting harder....

                        The worse feeling is the helplessness. Wanting to do anything and everything you can for the person you love and care about. Yet seeing them losing that light in their eyes and not wanting to fight is even worse. It is truly painful for us all... I am just trying to be there for him, try to lighten his mood, make him laugh a little and forget about what's going on.
                        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                        Girding my loins and grinding my battle axe for them both...


                          Thank you everyone. It is comforting to know there are people who understand what we are going though.

                          Dad does have carers who come in of a morning to wash and dress him now as mum couldn’t manage on her own with that part any longer. She’s not getting any younger herself. Myself and 2 sisters try to go around as much as we can but with work commitments and kids it’s not as much as I would like.

                          Everything is so complex. So much to consider and learn.


                            Hello DeniseB-C It helps not to think too far ahead so much. Live for the day in the knowledge that no matter what happens tomorrow will dawn. 😘xx
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                              Hi Denise

                              I know it's really difficult wanting to do the best and the reaction to what you are trying to do being the opposite. My husband looks at each bit of equipment with dismissal. No Wheelchair, no walking frame, no cough machine and he's not keen on his peg food but what can you do?

                              you can only do your best.

                              love and hugs Denise xxx
                              when i can think of something profound i will update this.