My mum is 82 and suffers from progressive supernuclear palsy. She is in now in advanced stage and palliative since December. Recently she has a blood clot and currently admitted into hospital. My intuition says this is her turning point and I feel extremely overwhelmed navigating this part of the journey to the point I didn’t go to the hospital as i always have been. Instead my brothers are there, i just can’t face it, though i have been on this journey for 7 years with her, living with her and caring for her . Any lived experience of this or advise will be helpful.
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XaiwalUk Thank you for contacting the community and sharing your situation with us. You have a lot going on and you have been on this journey for 7 years, with this part being particularly difficult. Feeling overwhelmed as a reaction since the blood clot and your mum’s illness in general is very understandable as you continue to navigate your role as daughter/carer and live in companion. You mention your brothers are present at the hospital and maybe some comfort can be taken from this as you confront your feelings. Can you talk to your brothers/other family members/staff about just how overwhelmed you are? Over the years you may have become very tuned into your mums illness and routine and you mention intuition - is this like a gut feeling? The fact that you are so perceptive and facing this difficult journey which you describe so well has given you a basis to reach out and here at M.C. there is also a number to call 0800 090 2309 if you would like further support outside the community. Personally I have no lived experience as such and can only offer my sincere kind thoughts toward you during this stage of the journey and encourage other community members to add who may have similar situations and words to share with you.
Paulette
Hi XaiwalUK thanks so much for getting in touch. It sounds an extremely challenging and overwhelming time for you.
As Paulette has said you are very welcome to ring our Support Line and we do have a registered nurse on there, Marla, who may be able to give some guidance and reassurance.
If you would like to speak to someone on a regular basis then we have a Companion over the Phone service. Companion service | Marie Curie
I hope this helps in some way. Our Support Line is open 8am-6pm Monday-Friday and 10am-4pm Saturday and Sunday.
You are of course always welcome to reach out on here too.
Take care,
Laura (Marie Curie staff member- Information and Support)
Good morning XaiwalUk
I am so sorry to hear of your Mum`s illness and her recent issue with a blood clot. Having been her carer for such a long period of time I am sure there is an element of feeling lost in what you can now physically do to help, and anxiety as to the near future. I would take comfort as my colleagues have said in that your brothers are there to share the support needed. PSP is such a debilitating disease and I have had personal experience of helping to care for someone in the latter stages of their illness. We are always here to listen and the Support Line can offer you help at any time, so please do reach out if you feel this would help. Talking about how you are feeling now will help dissipate this feeling of being overwhelmed, you are doing an amazing job caring for Mum and whilst she is in Hospital you can spend quality time with her as her daughter for now.