Bob and I have been married for 6 years. I’m a retired RN and I was well aware he had Parkinson’s when I married him. What I didn’t know is that PSP would hit us. I lovingly cared for Bob for 6 years , became very overwhelmed, then hired agency caregivers.Before I knew it there were way too many careers coming in and out of our home, then a few thins went missing, so I said “ enough”.
We both agreed it was time and I found a lovely place for Bob. “Enhanced” assisted living. On Dec 1st he entered the facility and surprisingly really likes it there.
He has been rapidly declining for a couple of months now. He can no longer take even one step. Losing ability with his hands. WAY short of breath which can come with PSP. More swallowing issues, etc.
His neuro put him on hospice yesterday. When Bob graduated from college, decades ago, he was the star scholar as well as the star athlete. When we married just 6 years ago we both had been widowed so to find happiness, again, was a dream come true. He is still so handsome, brilliant and kind. The kind of kindness you don’t see often enough in people. He is just all goodness.
Even as a nurse to watch what this evil disease has taken from him is beyond painful. I now have a broken heart. He is really turning a dark corner. Way more breathing difficulties. I want to continue to be as loving and supportive to him as I can possibly be. I’m an emotional wreck. I took a mild chill pill last night and that really did help.And I can’t see him due to Covid.
I really feel it’s been an honor to be by Bob’s side and help him through this journey.
I’m just devastated and feeling raw. I so wish I could stop this and make him whole.
This wretched disease never stops. He was a very physically strong man and it has ravaged him.
Every night I read your posts and marvel at how amazing you all are. I have so much respect for each and everyone going through this.
Most people would run~ and real fast.
We, including myself, are all beyond amazing. We are all people of the very best kind.
I am sending you all love, big hugs and positive thoughts during this pandemic.
Please stay very very healthy.
Betty
Xxx
Written by
Bettina545
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Care giving and PSP are an endurance test. So may of us run ourselves into the ground doing it. I told Larry PSP was going to kill one of us but I didn’t know who it would kill first.
I got high praise from people for doing the care giving. What else was I suppose to do? If you love someone you do what you have to do.
My sister (late 40s) did go before mom. Mom is still going strong 3 years later. The assisted living facility has been a blessing - and sometimes I wonder (though pointless I know) if things might have turned out differently for my sister if we had mom in the facility sooner.
I discovered strength is given for the hour of need and I also discovered that love grows deeper as the caring days grow by.Betty. thank you for reminding me.
Your post is quietly beautiful even in its deep sadness.
Yes, I too worked for the NHS, in the community and saw unbelievably dreadful suffering. When PSP came to our home I was quite shocked at the emotional impact, the combination of sleep deprivation, from the long hours of care giving, the continuous drip, drip of incremental loss and the struggle to keep up. It is the hardest thing I have faced in my life and nothing prepared me for it.
Is Bob fairly close by? Oh, I was going to ask if you get to see him regularly, but you will be on lock down? We are facing that with Liz being in a nursing home. More heart break!
It sounds like you are a fully paid up member of our community!
I wish you both the very best that you can have together in these difficult times.
Beautiful post. It bought back so many memories, good and bad. I always felt it was a privilege to look after Steve and I don't regret a single minute of it. Of course I got cross, ranted and raved, kicked and screamed, who wouldn't, watching a loved one, slowly, very slowly, dying. But those feelings go quickly and I am left with the overwhelming love I had for this man.
My heart goes out to you, in this moment of need and you can't even see him, I can't even try and imagine how awful that must feel.
All I can do is send as much strength and love across the ether to you.
I am so sorry I missed the fact that Bob has passed on.
I live just outside London UK.
We are on lock down. We can only leave our homes for clinical needs, food shopping and for one hour a day for exercise. Many are finding that hard to cope with. I am lucky, I am a bit of a recluse anyway and have a small garden to get into shape for the Spring planting. My heart goes out to those stuck in small overcrowded flats.
Are you on any kind of lock down where you are? Being on lock down and grieving is a bad mix.
As Anne said above - Sending love and strength across the ether to you.
Big hugs to you too. As Jeff says if you love someone you somehow find the strength to do what you have to do. Bob is so lucky to have met you and found joy again. I am sending you the second half of my 24 hours in the life of a carer.
The way you feel:-
Helpless to make things better.
On your own after hours, totally isolated.
Unhappy.
Restricted because your life revolves around another human being and what they can do.
Self-reproachful when you have to admit that you can no longer manage or if you lose your temper.
Incredulous at the time for help, support, assessments to kick in.
Nettled at the lack of understanding that a ‘need’ should be addressed before it becomes an acute need.
What you need:-
Tolerance needed all the time to prevent temper rising.
Humour: to see the funny side of things otherwise you would go mad or blow a gasket.
Elasticity: attached all the time by an invisible piece of elastic to the one who is needing care.
What you feel:-
Let down by the system.
Insane as life is so weird and unpredictable.
Frustrated at being unable to access both suitable support and funding.
Emotional keeping tears at bay.
Overjoyed when even tiny positive things occur like a dry or peaceful night, a smile or food eaten safely.
Full of anxiety and stress.
What you really are:-
Awesome in ability to find the inner resources to cope.
Courageous and Cost Effective in saving the Government a fortune.
An amazing actor usually hiding what one is really feeling from the person for whom one is caring.
Resourceful in finding ways to cope and make things better for the person who is reliant on you.
Empathic as much as one can be and without it being returned.
Realistic that you need to be a friend and have friends who are in the same situation and understand.
Reading your post, Bettina, and your description of Bob, reminded me so much of my late husband, Rod. A strong, handsome, funny, kind and caring man who always put others first, whose only enemy in life was PSP - everybody loved him from the very first time they met him.
I looked after him for 4 years, right up until the last week of his life when we were let down by the system and I had no choice but for him to go into a nursing home. He displayed dementia with PSP and looking back now I have no idea how I coped, but my deep love for him kept me going and I wanted to honour the vows I made to him on our wedding day.
I cannot advise you how to get through this last phase because we are all different in the way we deal with things but it may help to hear my strategy. For a long time I was sure the miracle cure would come, or I would wake up to find it was just a bad dream, or a visit to the neurologist would reveal a wrong diagnosis and that he did in fact have something treatable. I guess this is called hope. For me, the acceptance came when I could no longer bear to watch his suffering, and I knew I had to let him go. He would tell me, in tears, that he didn't want to leave me alone, but I made him the promise I would be OK. During the last week of his life I sat and held his hand and told him it was ok to drift away to a happy place. He passed away peacefully 2 days later. I've been without him for 18 months - does it get any easier - no - but I have found that life still holds so much joy, especially in the form of my little granddaughter and I will honour his memory by continuing to live the life I have been given in the best way I can.
So now I sit here in tears typing this because it brings back the painful memories to me as if it were yesterday but I know so well how lucky I was to have had such a wonderful man - some never get to experience the unconditional love I had with Rod. It was the final acceptance that got me through those last weeks. My heart truly goes out to those on here desperately negotiating this dreadful journey, whatever stage they are at, and to you, Bettina, I can only wish you and Bob some kind of peace in the coming days/weeks. You've had a double whammy - life can be cruel.
This wretched virus is causing much anguish for many but when you can't offer love and support to someone you love who is suffering is tragic. When, through circumstance , a loved one is having to be looked after in a care facility that cater for his physical needs and you are unable to visit makes it all the more difficult. Hoping that you manage to hold it all together during this terrible time of lockdown and that you can get back to supporting Bob through his journey.
My heart goes out to you, and to your husband. This is a very hard road that you are on. Please allow yourself to rest. I know everyone says to take care of yourself, and it's hard to do that but perhaps with him in a home, you can do that now. I'm so sorry you can't see him right now. I hope you're able to talk with him or communicate in some way. We had many blessings along our hard road and I can see that you will too, as you say that "it's an honor to be by his side." I considered it an honor too. I learned so much from my husband during this journey.
As many said to me before my husband died, just love him as much as you can. Time goes by and with this disease, things can change quickly.
It is a shocking illness my heart goes out to you. My brother in law and myself nursed my sister. She never complained bless her and it was heartbreaking to see her deteriorate. God bless you xxx
I am so sorry that your husband has deteriorated so quickly. I feel sad that this pandemic is preventing so many partners and carers from spending valuable time together. PSP is a cruel disease without the separation of COVID 19.
I lost my husband, Les, just over 2 years ago and he also had a very rapid decline. It is so hard watching the person you love so much struggle.
Try to stay strong and well during this tough time.
My husband died just over six weeks ago and it is heartbreaking watching your loved one decline. Perhaps Iwas lucky as he was not in any pain and still knew every word I said but unable to answer. I really feel for you at this time not being able to see Bob. Can you Skype him with the help of the staff? Xx
Dear Betty my heart goes out to you it really does. The only comfort you can take is that Bob is in a hospice and being cared for with love and kindness. Please do take care of yourself. Sending love to you both xx
Dear Betty, I'm so sorry you are both going through this and made so much worse by being apart. Look after yourself and it's okay to handle this however you best can.
Your post is beautiful and positive. Take care love and hugs xxx
Dear Betty, I had to reply. Your story is so much like mine: a late, wonderful love, after divorce, cut too short, the grief and the gratitude. We had almost 10 years from our first meeting, and I wouldn't choose otherwise. I had the love of a marvelous, brilliant, sweet man. I was lucky. And, like you, I would say it was an honor to care for him, although it was impossibly hard sometimes, and the loss is devastating.
I am very sorry that this virus has separated you now, but what a mercy he is in a good place and being cared for. Now please try to care for yourself. Rest as much as you can.
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hello I am the wife of a newly diagnosed husband joining your lovely supportive group.
Husband progressing quickly 
My darling Husband is free of the illness now
My wonderful husband passed
