Hi everyone, it breaks my heart to tell you all that my beloved husband died, aged 72, at the start of this month. He was diagnosed with Parkinsons in 2016.
Two and a half years ago, after a couple of falls, his condition slowly deteriorated. When I say deteriorated, he slowed up and was prone to dizzy spells because of low blood pressure.
What I take comfort from, and want to share, is that we persevered in our efforts to make life as full and as enjoyable as we could. Yes, there were ‘off days’ but they were vastly outnumbered by brilliant days - and we tried to make the most of these. With some coaxing, my husband availed of all the physiotherapy, speech therapy, Tai Chi that we were offered and though quite shy by nature, we attended various PD lunches and get-togethers. These could be difficult but we always came away feeling that we were luckier than many.
We had fun with our children and grandchildren; holidayed when we could, although breaks became shorter and closer to home, and kept battling on.
Sometimes - often - it was a battle. Now, as I mourn him, I find myself wracked with guilt for the times I got angry with him, wasn’t as patient as I should have been, and cried loads of tears of anger, frustration and sadness at the fate we had been dealt when so many of our friends thrived.
Despite that, I think and hope I did my best, while faced with exhaustion and a ‘shrinking’ life. My husband died very suddenly in the end - after a wonderful four days of fun on the beach, going out for lunch, playing with his grandchildren, enjoying a beer and the music he loved, until a sudden collapse.
All I can say is, we are all human - sufferers and carers - and life with PD is hard. But celebrate the good moments, no matter how brief or rare. And take photos, of those times as often as you can! I can look back at a host of happy photos and am deriving great comfort from them.
The ultimate surprise and comfort in my husband’s death was that he was able to donate two strong healthy kidneys to two people in need. PD doesn’t kill everything.
Stay strong, and thank you Forum members for all the support and guidance you offer x
So sorry to hear your sad news. I think when I go I want to go just as your husband did.
Hanging around in pain and getting no pleasure in life for months and months is not for me.
Do take care of yourself.
Best wishes
Steve2
Hello Emboc.
It is very rarely I come to this forum now as my husband died nearly 11 months ago after 20 years with PD
It is so encouraging you are able to feel gratitude for all you had.
I understand why you may be feeling guilty or regretful but I think it very helpful to realise in essence your husband was the same man he always was. It was the illness, not him that caused you to have such negative feelings.
When I reflect back now I feel such sorrow for all the ways Parkinson’s affected him and angry at the cruelty of the illness. Something too many people don’t realise.
However I owe it to him to go on and live my life to the full within the moral compass we both shared.
Much love to you
Condolences to you, I’m sorry for your loss x
Thank you so much for your kind words, and especially for dealing with my ‘guilt’ the way you have. Your words are a comfort - I never stopped loving him, through all the difficulties but I still regret the times I lost patience.
PD is a cruel, cruel disease that doesn’t get the recognition it cries out for x
We were ‘lucky’ if such a word can be used in these sad circumstances. I pray that you and many others will find the same peace x
We are so sorry to hear about your loss, Emboc. We hope that you have a supportive community around you to help you through this difficult time, and please remember that you’re not alone. We are here for you, and so are others on this forum.
If you ever need us, we’re just a phone call away. Our helpline is available to anyone who has been affected by Parkinson’s. It’s totally free and confidential: 0808 800 0303.
Sending all our love,
The Parkinson’s UK Moderation Team