After 4 years of pushing him, pushing for tests and watching a 6 foot plus ex Royal Navy football/rugby player fall, loose the use of his right hand and leg, loose the ability of speech he finally had a fall and was admitted to hospital. I chose, rightly or wrongly to push for more tests and 8 weeks later the diagnosis was CBD. From there it was all taken out of my hands. We think he has CBD they said. He is not coming home with you, they said and that was that. He is now in a nursing home.
Big difference from the so called wonderful retirement we had planned. Move from Devon to Northumberland Countryside, wonderful cottage in the middle of nowhere, just us and the dogs. Leave the children to their own devices, we married young with the plan of still being young when we retired.
I'm sure you have all heard it before, but we were that couple, quick kisses in the woods, kick the ball for the dogs and maybe even a wet suit each while we taught one of the dogs to swim. A bit of DIY at home to save a bob or two and a barbeque with a glass of wine on a summers eve.
All gone .... poof.
I know so little about this disease and every day I visit the home I leave a piece of me behind. He's only been in there for 2 weeks and every day I try to be brave. But its hard and today has been the hardest.
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Georgiomurfio
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Dear GeorgiomurfioI am so sorry to hear of your and your partner's story. The disease, whether CBD or in my person's case PSP, is truly a heart break. Its OK to grief at this time and feel every emotion under the sun. Its also OK to put yourself first too this week and next week and any week you need to, to take care of your own feelings and emotion, because the nursing home will handle the physical care of your loved one but they can't be that joyful visitor that you could be. I know visiting the patient in residential setting can bring out all kinds of emotion in them, I don't know how much speech your person has left, but remember for the hardest day, there will come an easier day.
Have the glass of wine, kick the ball for the dogs, come to visit your person in the home and tell them stories of your favourite days together. Keep battling on, you have battled this far and you will find the strength to keep going. This disease teaches us resilience.
After nearly 10 years of struggling with CBD my wife passed away in October last year. Wish I could give you words of comfort but it's a hellish disease that brings so much heartache. Remember the good times ♥️
Hi my husband was dx with CBD in 2018 age 55. He is looked after at home. We have 'for now ' CHC funding for carers. It is a daily heart break. We love Northumberland too my hearts lifted when we used to take trips there. We would have gone in 2020 when he was able but covid stopped that.
So sorry to hear the story, really traumatic and it's so hard to accept that all plans and dreams have moved out of reach. Big virtual hugs, you are not alone. 🫂🌻
I agree with "easterncedar": Keep on living your love as best you can.
And I continue with a thought from "bazooka111": We all have this mountain we are climbing, and some days feel like we are barely hanging on … I choose to focus on the good. I am not naive, I realize I am going to have to eventually say goodbye to my Mother from this dreadful disease —- but, I refuse to let anticipatory grief smother the days, weeks, months that we do have left.
Finally, reproducing the phrase of “Anne Heady”: "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
So very sorry to read your story, Unfortunately the trail sounds so familiar with this terrible disease, i have recently lost my wife with PSP after many years of being diagnosed with "Parkinsonism," like you it took along time to get there. The one thing I found out is the few people that know anything about it including nursing staff, I found that when she spent any time in Hospital or Hospice although the staff were good in a lot of cases they did not always see that she was not being fed and I spent many hours making sure she was by feeding her with the soft foods that by then was the only food she could swallow. The problem in both the Hospital and Hospice was that the people responsible (not the nurses) for delivering the food, left it on the tray and not realising the problem she had with her hands and voice to call for help, and called back some time later to remove the tray without it being touched.
Take all the help you can. It is easy to feel guilty later, with all the times you feel impatient and helpless, but be assured you should not be, you are not on your own, and I hope that in the not too distant future it is realised in the medical profession what a terrible disease this is and receives as much attention as some others do at the moment. Remember the good times.
I am so sorry to read this. My dear husband struggled for ten years with CBD, losing the use of his right hand, and struggling with speech and cognition. He died this past November and like you, I have experienced anger, rage, disappointment, and now utter grief. The last ten years was not what we had planned for our retirement either, so I empathize with you and can only wish you and your spouse moments of so much love that you will find strength on this journey. Cherish the moments of "normalcy." There will be a few of them, precious few, but so very precious. Bless you and your partner. The road is rocky, but where there is love, there is some comfort and strength to go on.
sorry for your husband’s diagnosis it’s a tuff time for you. My husband was in the Royal Marines and he has lost all independence. We have just had our 51st wedding anniversary and expected to have many more like yourself . Take care 💜
Forgive me for typos but I'm trying to type with tears in my eyes. Your sweet post ..... all I can think to say is I'm so sorry. My army veteran husband passed away from Agent Orange exposure resulting in CBD this last September. He was diagnosed with it in 2018. He remembers a low-flying plane while outside in Vietnam, he remembers his arm getting sprayed by something that caused red blisters. We fell in love in highschool, graduating together. Of my 77 years on earth, he was my safe person, the center of my life for 60 years. I don't think the missing will ever go away. Part of me is so thankful for the way God took him, hospice providing sedation so that his passing was peaceful and without pain. Now, for the first time in my life I'm trying to navigate this strange new way of living without him. Our sons are wonderful and we talk on the phone at least once a week. One lives in Oregon, the other in Montana and I'm equal distances away in Idaho. I have friends and neighbors who care about me and I believe I will stay here. It's where we decided to grow old together. So I'm surrounded by people but I'm still lonely, only for Tom. He's always with me and I will not move on, but I will move forward with him in my heart. I'm thankful for all our memories and that we had each other for so long. I'm comforted by something a friend who also lost her husband sent me: "Grief is the last act of love we have to give to those we loved. Where there was deep love there is deep grief". People tell me I'm strong. If that's true, it's only because I have Jesus who helped me through the years of caregiving and answered my prayers at the end of it. I send prayers for you and your husband and ask for strength for you and a peaceful passing for him. I encourage you to relive memories with him, talk about the things he did over the years that made you proud, the things that he will be remembered for, what made him a good husband, father, son and friend. Give him lots of gentle touches, strokes, and nuzzles.
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