Helpless and Guilty

My mother was diagnosed with CBD in July, but she's had symptoms for approximately 3 years. She uses a walker around the house, balance is horrible, her right leg is quite useless and her right arm is bent most of the time. Mentally she recalls some things with ease, other things not at all. Slow physical deterioration along with mental deterioration. The doctor said she probably has 18 months to two years. And a part of me wonders "what's the point." I've read a lot about this disease and know it just goes downhill from here, apparently faster when you lose both physical and mental faculties. I feel guilty for thinking it, but I really wonder what the point of living is for her. Selfishly, it's horrible watching this slow motion fade into oblivion.

The feelings of helplessness and guilt are close by for me. Anyone else experiencing this?

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  • Hi

    Yes.

    It is perhaps easier for me as my wife does not care to live long with this illness and I was raised with a somewhat Buddhist view of life: Life is struggle, its value is in love and achieving good things is good, but life is, after all, 'but a passing dream', sort of thing.

    It is not easy to watch someone we love deteriorate and suffer. Because we love them we suffer too. It is natural to want their suffering to stop along with the suffering it causes us as well.

    Why feel guilty that you want their suffering to end?

    I hope this post does not upset you.

    They are merely my thoughts.

    It is hard to bear and then we have to work hard to put in the best care we can on top. Its a tough call on the heart.

    One day at a time, just one foot in front of the other. It's doable. Though sometimes the tears get in the way.

    Warmly

    Kevin

  • Thank you Kevin! No, you're post didn't upset me in the least. I very much appreciate the sentiment. Thanks!

  • His reply helped me too!

  • What an amazing, truthful reply. One reply to someone else's post can reach so many.

  • Yes. I've thought about this a lot. Helplessness and grief will be with you for a long time.

    My husband died with PSP 2 months ago.

    We talked about this a lot when he was able to talk. He was clear that quality of life was what mattered and he didn't want to prolong life with a PEG.

    What we found was that what makes quality of life changes. He had always been an active, sociable man but was content as long as he had me and his family, could enjoy his food, watch tv. He got very distressed at the toll on me.

    He had no pain and I was able to care for him at home until his death.

    Its painful to watch but the patients' perspective may be different.

  • "... will be with you for a long time." Something to look forward to. Sorry... gallows humor. My mother doesn't ever want to talk about her diagnosis, what's coming, none of it. She simply says she's fine and if I think she needs something, a chair to assist her stand, she says she doesn't need it now, but "eventually." I feel like screaming at her that "eventually" is here NOW. I don't see the point in a PEG.

    Sorry... just my frustration with this seeping in. Thank you for your note though; nice to know I'm not the only one living this.

  • We find the helplessness hard so think how hard it is to accept when its you ! Its unbearable for them if they really look at it !!!

    We all know how you feel.

    xx

  • Hi Jean, how are you doing? I found it hard thinking about Christmas so soon after C went and hope you are coping OK. The actual day was fine in the end as I stayed with our son in his house that C had never been able to stay in so I didn’t picture him in a particular chair. It was weird but not too sad. I hope you are able to experience some joy this Christmas.

    Lots of love

    XxxX

  • Hi, Choclab511. I’ve written a lot about the PEG in the past and it has to be the decision of the one living with the condition but the benefits for my husband were:-

    He never had a chest infection or anything else involving even one night in hospital.

    A pressure sore he had for weeks disappeared completely after two weeks of the PEG as a small bottle of feed was 300 calories, large bottle 2000. Adequate nutrition cleared it.

    He never choked at all once the PEG was fitted, although regurgitation could cause choking, it didn’t.

    He gained weight.

    His skin was no longer dry as water could be given easily keeping him hydrated

    He never suffered from constipation after the PEG

    I could eat my meals uninterrupted

    We could go to restaurants with a back pack on his wheelchair and pump and other diners didn’t know he was being fed

    Medication could be given through it

    When he decided he no longer wanted to continue being fed I stopped once the GP ascertained he understood he would die without food. The last two weeks of his life were peaceful, calm, pain free and relaxed. He could still do thumbs up until two days before his death, indicating he was at peace no medication, no chest infection. He knew when family and friends were there.

    Not everyone wants a PEG but for my husband the last 10 months of his life were a great improvement on the previous months.

    Initially I thought as you did but C decided he wanted it once he started choking which scared him and me a lot. It avoided aspirational pneumonia. He could still eat yoghurt and ice cream so had the pleasure of taste.

    I hope when the time comes, your mother will be able to decide what she wants.

    Best wishes.

    X

  • My mum exact same she said stop treatin me like a invalid its tough some days but she says once u takemy independants away thats me givin up so i do things sneakly of u get me lol shes strong stubborn women is my mum so im goin at her pace still thinks its a trapped nerve i dont even answer her to that anymore x

  • Dad was diagnosed in Jan '16 with CBD, symptoms probably 2.5-3 yrs prior. One thing you should do is get all the necessary paperwork in place for a family member to step in and take over the decision making.

    Ron

  • I don't mean to devalue your experience at all, or seem unsympathetic to your own pain, or your mother's; this is all so very hard. But, just to add my two cents: Life is short and full of suffering for most of us, one way or another, and still we find the fight to stay worthwhile. My views on what constitutes a quality of life changed dramatically as my sweetheart's compass closed in. It doesn't take much sweetness or more than a moment of pleasure or comfort or a bit of music or awareness of a kindness to give value to a day. Constant physical pain is one thing, the simple struggle to get by for a little while longer is another. Time is all we have, after all. If we can hold on, why not?

  • It is horrible watching a loved one deteriorate and wonder what the point of them living is but it is their life and they may think differently living with the condition than those watching or caring. My darling husband lived for 6 years after diagnosis and was unable to do anything other than slightly move his thumb. He had to be hoisted and had a PEG but right up to the time he decided he had had enough he knew exactly what we were saying, told me with thumbs up that he still wanted to go on trips to the sea side, parks etc, he chose the destinations by putting his thumb up when I spoke a list of places, and put his thumb up or down when asked every night if he had had a good day....mainly up. We listened to music together, his sons & grandchildren spoke to him, sang to him, told him they loved him and stroked his hand. I didn’t feel any guilt as he was still able to make some decisions until his final decision which I and the doctor respected.

    I was lucky as my darling wanted to live and just by a simple slight movement of his thumb and me questioning, I could work out what he wanted. I know everyone is different and some with PSP don’t want to go out and have had enough a lot earlier but I think it’s important that if at all possible, they should be encouraged to make as many decisions as they can.

    As the years went by, all the family and my darling knew what was going to happen in the future but we didn’t give up and wait for it to happen. Every day, month, year got harder for us all but we made the most of what time we had and managed to build lots of good memories in spite of the horrors that were taking place. It was awful when C finally lost his smile but even then I knew when he was happy or sad and if I put my face on his chest he would stroke it with his thumb and say ahhhh. He would do the same with our guinea pigs and each one would stay still and settle down on him.

    If you haven’t already done so, work on communication for the future, thumbs up and down, hand squeezes, anything to help your mum make decisions. Later she may not be able to communicate but still understand everything/most things so I think it is important to continue to speak to her as if she can.

    I hope you soon lose the feelings of helplessness and guilt. I don’t know if you are her main carer which is so hard but talking to her like you would have done before PSP and laughing with her as much as possible will I think, hope, make you both feel a bit better about the situation.

    Very best wishes.

    XxxX

  • I don't think your thoughts are unusual. Mine were the same in similar circumstances. You will find there is a great deal of frustration along the way! My husband did not communicate a great deal about himself as a general rule, and seemed unphased by changes in physical and mental state.

    He would not discuss morbid things like Power of Attorney, will, burial service. He did not consider himself threatened by anything he had been diagnosed with, but he was 'mad' that he had been given Parkinsons drugs that did not help, and he was happy when diagnosed with CBD instead! He had no idea what that meant! I did!

    I also had a better 'gut feeling' about timeframe and life left. I found this site incredibly helpful in working out what assistance to ask for! I got respite care arranged as I was certain I could not leave him at home alone when I went on my walking trip, planned for 12 months. He didn't think it necessary - would be fine alone! I got physio on board, and walker, stick, raised toilet seat, monkey bar at bed head. He agreed some were helpful, but "don't need the walker!".

    Before CBD diagnosis, I knew something was drastically wrong, and not common as nothing fitted into any common pattern. I had CBD or MSA pegged long before I found a doctor who had similar mindset. I even picked Parkinsons as a possible diagnosis after a visit to my husband's cousin who was a highly qualified nurse, and wanted to see his handwriting. She was looking for micrographea, very small handwriting.

    So - use your gut instinct! Try and find out from your mum just small things that indicate why she doesn't do something. It may help you understand how the disease is progressing. Try to help without being intrusive -(and oh! how hard that is!). Plan a quiet, special Christmas! Unless you need to include special family! Just enjoy each other's company without 'bitching' -tthat's hard too, but does make life better! I understand that feeling now, and it comes from frustration that your loved one can't see what you can see!

    Try and second guess the progression. You know what facilities are at your home. Is it feasible to change sanything to help your mum continue to live at home? At what point do you think this will not be possible and how will you deal with it? Try and be prepared! Hard!

    Most important is to watch what you see as a downward progression in either physical or mental ability, even both at same time. I noticed there were periods of sleep, a day or two, which seemed to come after an 'event', a very small mental change or physical deterioration. I wondered if my husband was having little strokes (TIA). These 'events' must give similar effects as doctor thought he had had a stroke while in hospital, but no evidence on ct.

    My posts here began after my love was admitted to hospital. I called it a rollercoaster ride as progression was so fast and totally unpredicted by medical staff. When he was discharged to a nursing home I was told he could have 12 months to live. With the progress in deterioration i was witnessing, i could not believe he had that long - and i fervently wished it might not be that long! However the doctor in charge also noted that pneumonia might make this period shorter. What infuriated me was his refusal to sign the POA as I needed to make decisions about his place of abode and care. It was a stress i did not need at the time.

    CBD is unpredictable! Some progress is fast; others document a far slower progression than my experience. You need to work out yourself how quickly, or slowly, your mum is changing, and plan accordingly. Hopefully you will have heaps more time to ponder and plan, and perhaps your mum will talk to you too before she loses that ability.

    I hope you have that 18 months that are predicted! Investigate what facilities are available to help you, hospice, home nursing anand respite care for both of you! You will need it all! My feeling is the sooner you put day visits in place for your mum the easier it will be for her to accept, you too! It will be a way that she can be in touch with others, take part in hobby, physical therapy and mental stimulation. You may need to stay a few times to show her she isnot being 'abandonned'.

    We did not do this enough! We found Dance for Parkinsons and found it stimulating! I stayed too. Did not think my love would be interested at all, because he always had 2 left feet and never got up to dance with me! He had a great time among strangers, but people he could relate to as they also brought their wherlchairs, walkers, and some could not stop their limbs dancing.

    I came on this site because i needed confirmation of my predictions that were not being backed up by the doctors. I found answers to my question 'What does death look like and how do I know it is happening. At that time i was looking after my husband alone and had no support i could believe in.

    I hope my ramble has been helpful for you and that it has not been too upsetting. I have said how it is because i found it a help, and in some ways, a comfort, to know what was going on and in that way, stay in control. My hope is that it helps you too, to understand, stay on top, and manage the way forward for your mum and give her the love and support she needs while she deals with awful effects of this disease.

    Big hug

    jen xxx

  • My Mum also has CBD. Diagnosed April 2016. She has been showing signs since about 2012. Last year the neuro who diagnosed her said she was mid to late stage and had a year or two prognosis. I've never told her that, she knows that is incurable though and progressive. She gets very low and frustrated with her body and mind that is failing. Every patient is different so it is very hard to predict I feel what the prognosis is individually.

    Mum suffers with apathy and the only place she will leave the house for is the hospice once a fortnight or hospital appointments. She went into the garden about three times this year. It is her choice though, for me I would love her to go out more and make the most of what time is left. She says she is happy watching TV or listening to radio.

    The roller coaster of emotions is a big one we have to ride. I've felt like you many times about this is no life, I don't want her leaving either but to see her fade away is hell. Her own moods swing from not wanting to be here to having a good old laugh at TV programmes.

    Is sure is not an easy journey for anyone involved.

  • Yes i can reflect my mum was diagnosed in july with cbd her mind set she thinks is normal some days it feels it but very forgetful shes no use off one hand eatin is very slow words can be slow she still indenial and says its a trap nerve but time is precious so im makin the most im angry why mum god has touched my heart at this time back to neurologist in 18th dont know wot lays ahead but this disease has took my fun mum who worked so hard and loved to dance ect hard so hard xxx

  • My mum has had CBD for 7 years now & yes everyday is a little worse than the last & watching someone you love have their capacity to enjoy life & function reduced is heartbreaking. Everyone is different in how their symptoms progress too & Mum has is still with us despite the prognosis she was given. I’m thankful for every day with her & for the little things like her joy at having my dogs jump all over her or her giggling at a silly joke. It does get a lot worse And Mum found it hard to talk about it too. But I made sure whilst she could still communicate (she’s locked in now & doesn’t speak or show much emotion, but does still comprehend), we discussed the things that mattered.... keep trying it takes time to accept for your mum. It’s a horrible disease, never feel guilty for feeling guiltily , it’s an emotion I’ve had many times & understandable when you love someone

  • I am in the same situation as you. My husband has been diagnosed with both PSP and CBD. CBD about three years ago and PSP last February. His right arm is bent and stiff although his right leg has not been affected as yet. Speech is soft, slurred and mostly incomprehensible. His balance is not good at all. He coughs explosively and often. He has a healthy appetite and is craving sweets which is unusual for him. He has his eyes closed for the better part of the day, watches/listens to TV a lot. He still manages three exercises classes a week and daily walks. Loves his iPad but has trouble using the keypad.

    Yesterday we meet with the occupational therapist and agreed to bring in a Hospital bed since he can no longer sit upright and has been falling out of bed. He gets up many, many times during the night because he feels the urgency to urinate. We will also get a lift chair for him to use in the living room.

    He often talks about medical assistance in death (MAiD) and tells me it will happen within 18 months. So he has a grip on his reality and sees me struggle as his needs and wants change daily. I try to hang in but feel guilty every day for not being more patient but all I can do is do my best.

    I get more from this forum than I did with the Parkinson’s support group as these conditions are so radically different. Thanks to all of you who share.

  • All of the above! My Dad nearly died (twice) recently & now he's in a nursing home with not much to look forward to, apart from getting worse if the truth be told. I often (guiltily) think 'why, oh why didn't he go then & his suffering would be no more) terrible thought some may say, but not on here I think.xxxx

  • Thank you to all who responded. As sad as it is, it's nice to hear from others who are unfortunately dealing with similar issues.

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