My dad was diagnosed with Parkinson’s 25yrs ago and we are now at the palliative stage and my heart hurts immensely, I can’t cope with the thought of him not being with us anymore, we are a really close family and he is like a best friend to me, he is currently in hospital and his health has taken such a rapid decline over the last 4 weeks and to be told we have no more than a few weeks with him in our lives is just too much for me to absorb. Has anyone gone through this or going through this stage, he has lost his ability to swallow and is unable to move, we are risk feeding him and on each sip of water you worry he could choke, I am worried about aspiration pneumonia and malnutrition. It is horrific and I really don’t know how to manage with these intense feelings of sadness
Hi Bluebellwood,
We’re so very sorry to hear your father has entered this difficult stage, and we certainly understand the feelings you’re feeling. We will not diminish the challenges you’re facing, but we can at least assure you that you are not alone. You’re sure to hear from other members of the community that have experienced or are experiencing the same now. We would also encourage you to reach out to our helpline, which is free and confidential, on 0808 800 0303. Our friendly advisors offer a wealth of support services, including psychological support for family and carers in your area, and are simply willing to lend an ear if that is what you need. They have provided comfort to many and have a sterling reputation among the community. Please do connect with them when you can.
With our warmest welcome,
Jason
Forum Moderator
Hello Bluebellwood
My heart goes out to you and your family at this very difficult time for you all. I wish I could tell you there is some way for you to cope with what is happening or even that there is something I could say that will make a difference; too often whatever is said at these times can seem trite, cliched or meaningless even when offered in all sincerity. Nevertheless, I will take that risk and maybe, just maybe, something in what I write will help you just a little.
First I would like to reassure you that anything you are feeling right now is ok. There is nothing unusual or strange in how you feel, it is simply your way of trying to cope with a situation that is virtually unbearable for you to think about, the loss of your much loved father. Whatever the circumstances you would probably be feeling bereft, but given the circumstances in which you find yourself, your feelings are at the moment being governed by fear such are the risks he is facing. What you must try to remember is that you and your family are not dealing with this on your own, you don’t have sole responsibility - he is in hospital and help can be quickly summoned if the worst should occur,
However hard you are finding it the fact is that you are there with your family supporting and being with your father at this time. That is what is important now. Being with someone as their life draws to a close is in many ways unbearable, but it is also I believe, a very special time, a unique time in which you can say anything you need to say not necessarily with words but perhaps by holding his hand, stroking his face - in other words letting him know you are there - even if he can’t respond somewhere deep inside he will know you are there. Most people who are aware they are nearing the end of their lives do seem to find some kind of peace and an acceptance. I have seen it many times and often families however much they were to wish it otherwise, can see the person is ready to let go of life and ultimately only want to see them at peace, I hope that is how you can perhaps see that at the moment you are doing the right thing, the brave and courageous thing in simply being there for your father and letting him know you are there and showing your love by whatever means you are able.
After he has passed it will be your time and that of your family to grieve and mourn for your loss. It will be hard for you all, at times you will wonder how you will survive, all your lives will change but you will survive and start to remember all that made your father so special to you. And in time too I think you will draw comfort from the knowledge that you was there for him and he knew that and that he was loved as his life drew to a close. As far as I am concerned there is no greater gift one person can give to another and you are doing that right now.
Tot
I’m so sorry to hear this. Are you getting any support from the palliative care services or nurses? They should reassure you about the feeding and drinking of water and perhaps offer some suggestions to make it easier?
Dear Bluebellwood
I can only offer you my own experience after my husband died very gently and surrounded by love at home three days ago
We are a close knit family like yourself and all members of the family closest friends and the dogs were present. We also had the services of Marie Curie and Community nurses to ensure he was without pain and relaxed. As you are in hospital the necessary end of life meds will be provided. Dopamine was provided by patches
As his body starts to shut down feeding will not be possible. Fluids can be syringed into his mouth small amounts at a time You should have small sponges on sticks to dip into iced water to keep his mouth moist and stop dry mouth and tongue . This is a very caring service you can do for him. However you should have compassionate experienced nurses around you to ask and ensure he is comfortable and well supported He needs to be assessed regularly to ensure he does not need muscle relaxant meds and is not in pain . Particularly important for pwp
Very Importantly your father needs to know all his family are safe well and happy. There is nothing more he needs to do for his family. They are all fine. Tell him he is safe and you have all got him . He doesn’t need to be scared He will see you all again. Remember hearing is the last thing to go. Talk to him, stroke him, put your hand on his forehead and or chest…
Surround your father with love and allow him to let go There is nothing for you or your family to be scared of.
All my husbands carers and the nurses were profoundly moved by the manner of his passing. No one could have had better care. Finally his long struggle with Parkinson’s is over and he is at peace.
Much love to you xx
And my sincere condolences to you yogalady.
Tot
My thoughts are with you, thank you for replying to me xx