Bereavement

Hi my dad has just passed away due to Parkinson’s complications. I would just like to thank everyone on the forum for the valuable advice and tips that are on here. I will still use the forum as it’s a great support. It proves that we are not alone there are thousands of families coping with caring and juggling the care system which can be frustrating at times. I hope there will be some break through with research in the near future. Sending love to everyone on the Parkinson’s journey.

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Hi Lottiejw,

We are really sorry for the loss of your dad and what you are going through right now. We are glad that you have found this forum so helpful. Please feel free to give us a call on 0808 800 0303 if you need any ongoing support and advice.

Best wishes,
Edwina
Moderation Team

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Hi
Thank you very much

Hi @Lottiejw,

I know you’ve already received a response from Edwina, however, I just wanted to extend my condolences to you and your family as well. The forum is always here for you and I’m glad that you still want to continue using this platform. We know that bereavement affects everyone differently which is why we have a lot of information on the different types of support that’s available to you are your family, in addition to you helpline. You can find this info here - https://www.parkinsons.org.uk/information-and-support/how-do-i-cope-bereavement.

Do take care.

Best wishes,
Reah
Forum Community Manager

Hi Reah

Thank you very much

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You’re welcome @Lottiejw. :slightly_smiling_face:

I’m so sorry, we’ve just managed to get my mum a place at the local hospice , I have found the lack of knowledge of pd and related symptoms still shocking I do hope there’s more that can be done to raise awareness in the future and I for one will be making sure everyone I know knows of the symptoms etc. Take care I will be in your place very soon :cry: you’re not alone in this XX

Sending you love at this time. My dad went into hospital at Easter with aspiration and pneumonia, he responded well at first but had another attack and slowly became weaker. His medical team told me he was coming to end of life so he transferred to a nursing home but only lasted a week. My dad’s at peace we’ve had a bad couple of years as my brother died 18 months ago aged 46. My dad was never the same after my brother passed. Hope the hospice will give you the support you need.

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Oh goodness I’m so sorry to hear of your brother too . My mum sadly passed away yesterday in the early hours :disappointed: I’m still numb. She went into hospital in April and was diagnosed there. By then if was too late as she rapidly went downhill. She was a week in the hospice, they were wonderful and I was just thankful she was able to leave hospital . She was so stressed in there and not knowing what this cruel disease was she kept wanting to come home and thought she’d get better :cry: I’m devastated I couldn’t help her and that her last months of life were spent in hospital scared and uncomfortable, she’s didnt even get to enjoy a last sip of tea :broken_heart: Take care xx

Hi Dee
I’m sorry for your sad loss . You will need time to grieve and understand what has happened. Do not feel guilty about your mum you did the absolute best for her. It can be a shock and upsetting when caring for family members in their last weeks. I knew my dad was getting frail but until his medical team said end of life I didn’t believe it. The next few months you need to take time for yourself to allow yourself to heal. I find I deal with all the official things well but will cry at odd times. I cried when I was shopping but I find people are so kind once I explained why I was upset. I went to the hospital chapel for communion there was only me and the vicar which he gave me great comfort. Maybe the hospice have a bereavement support group which may help. Bereavement can be exhausting and you need to look after yourself. I have days in where I reflect and just go for gentle walks. Sending love to you and your family. Lottie

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Hello Lottie and Dee

I am so sorry for your losses.

My beautiful mum passed away on 16th June, after a 10 year battle with Parkinson’s and other related problems.

Like you, I am devastated. We were very close indeed. She was my carer, before I became hers. We lived together. She passed away at home, with my brothers and I at her bedside.

She was my life and I was completely devoted to her. I don’t know how I will live without her. I can’t bear that she isn’t here anymore. I miss her so much.

Hospices do offer bereavement counselling. I am just about to send off the form they gave me to fill out. Mum had palliative care from the community team and they sent me a bereavement pack, after Mum passed away.

Look after yourselves both of you.

Esther

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Thank you both . Sarah Jane I’m so sorry to hear of this . I’m glad you got your mum home. Yes st barnabas have said to contact any time and they will be in touch too soon.
We are just in the process of dreaded funeral arrangements.
I just really miss my mum ringing me which she used to do a lot , I grieved for this while she was in hospital but now it’s hit I’ll never hear her voice again just for a chat :disappointed: take care ladies xx

Hi @sarah_jane,

I see you’ve recently joined the forum and so I just wanted to take the time to extend a warm welcome to you. Also, I’m truly sorry to hear about the recent passing of your mum, my condolences to you and your family. I see that you’ve received a bereavement pack from the palliative care community team, however, we also have a list of useful contacts for you and your family to help you come to terms with your loss. You can find this information here - https://www.parkinsons.org.uk/information-and-support/how-do-i-cope-bereavement.

We also have a confidential helpline with a team of friendly and understanding advisers who are also here to help you through your time of need. You can give them a call on 0808 800 0303.

Best wishes,
Reah

Oh Dee. I hope you are coping with the funeral arrangements. Even though, I had my brother helping me through them, I found it incredibly difficult.

Mum hadn’t been in hospital recently. After the experiences she had there 4 years ago, I was adamant she wouldn’t go back in, unless they would let me stay with her 24 hours a day, (which they said they wouldn’t allow me to do). I feel that she deteriorated much faster, through their negligence and suffered more severely as well.

I am glad your mum spent her last week in the hospice and not in the hospital. I feel so bad that my dad spent his last weeks in hospital and died alone, as roadworks prevented us from getting there in time.

I totally relate to what you said about not ever hearing your Mum’s voice again. Have you got videos of your mum? I have been watching the ones I have of Mum on my phone. I thought I would find it too upsetting but I am finding comfort from them. It is like she is still here, while I am watching them. I don’t know what I would do if I didn’t have those.

I also relate to you saying you grieved for those phone calls while your mum was in hospital. I was grieving for my mum for a long time before she passed away. She was very rarely her normal self in the last months. She suffered a lot of side effects from the drugs (some were rare, such as Oculogyric Crisis), and she went into long sleeps every few days, which lasted up to 40 hours at a time and we could not rouse her. It was like she was in and out of a coma every few days. So, I treasured the times she was awake and her normal self.

Even though, I was already grieving for her, it didn’t prepare me for the grief I feel now she has gone. I do not think I will ever get over it. I know people are only trying to help and sympathise but I am fed up with hearing their platitudes, especially from people who have never experienced it themselves.

I spent 54 years with my mum, living in the same house. She was my best friend and we were like twin souls. I looked forward to seeing her every day of my life and now she is gone.

I am so sorry you are going through the same unbearable pain Dee. I hope you cope with the arrangements and then the funeral itself. I coped on the actual day, as it all felt so unreal. A different story afterwards.

Thinking of you and Lottie and everyone else going through this unbearable pain.

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Hello Reah

Thank you for your kindness.

I had already read the bereavement support, when you posted about it earlier in the thread. I will refer back to it again though. Thank you.

I have been reading the forum for many years but didn’t register until recently and this was the first time I posted anything.

I should have posted before, to give other members support but I was caring for Mum for the last 4 years and couldn’t find the energy (I have an illness of my own as well). We did win funding for Continuing Healthcare, so we had help but I was always Mum’s principle carer, through choice.

Thank you again and I will bear it in mind that I can call the helpline. I have called them a few times in the past but not since Mum passed away.

I haven’t posted the bereavement referral to the hospice yet. I know I must do that.

Hi @sarah_jane,

I’m glad you’ve found the forum helpful and I completely understand that you had other commitments to honour before you signed up. We definitely don’t hold that against you and of course, you can use the forum as often as you like

Do take care,

Reah

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Thank you for your kind words Reah.

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Hi Sarah-Jane
I can completely understand the hospital stay speeding up the process as I feel this is what happened to mum. Towards the end she would have so many more bad days than good that in a way it was almost a relief when she was sleeping more :frowning:
I don’t think I have any videos of her :frowning: I’ve been looking through photos of her when she was younger and before she started getting poorly and they have given me comfort . I was hoping I’d hear a voicemail from her but there aren’t any saved :frowning: .
We had the funeral on Tuesday and like you I actually felt I coped really well but I think I was just numb and not really with it.
I just can’t stop thinking of her time in hospital and how her symptoms were not picked up previously it just feels like such a waste . She struggled so much with her mental health through the years I feel so sorry for her that she never got a break. I just hope when she was well she enjoyed her time. I so wish things could have been different .
How are you doing? X