My Charles is free. He can walk again, talk again, think for himself and no more caregiver for him.
He passed 12/14/2015.
He was diagnosed with Parkinson's on 6/12/2012
He was rediagnosed with PSP on 6/14/2015.
He was put on hospice 7/29/2015.
Six months from diagnoses he passed. I can go back as far as 2005 for symptoms. some of the things that happened in his lifetime, he worked on a tracker at the age of 12, he did canal work for a few years, he worked in a metal printing shop for 25 years, he was a Forman for a crane company for 10 years, and he was a truck driver for over 15 years, this was his favorite job.
He smoked until the age of 55. These are some of the things in hi s life time, he would have been 71 in January. He lost his sense of smell about 20 years ago and his sense of taste not long after.
I'm telling you these things about him, so you can see if your loved one can relate to any of these. I know we are always looking for something to click with this disease.
I am holding up, good moments and really bad moments. But I have to say it is a total relief to see him at peace, it's like the stress was just taken off , like you would take off a piece of clothing. We were married for 52 1/2 years. So yes I am feeling the alone thing. Love and hugs to all of you that are still caring for you love one.
Alma xxxxxxxxxx
RIP my Love
Written by
AlmaJ67
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Feeling so sad to hear about your news but glad Charles is at peace. At least now he is free of this dreadful disease. Your memories from throughout your long and happy marriage will sustain you and when you feel the peace and love of everyone who cares about you hopefully that will help in the days to come then surround yourself with everyones kind wishes and find time to grieve and think of the lovely man who was your life partner and whom you shared so much with. Sending you my condolences and thoughts. Pauline xx
His ending was at home he was kept comfortable. Once his oxygen was gone 4 minutes was all it took. He was so very ready. I am so glad he chose not to have any life saving devices. He was in enough pain. The week before he started grabbing his head and saying it hurt. Also the last 3 weeks dementia set in 90%. All in all his last day was peaceful.
Hi Alma, I am really sorry for your loss. May Charles now get the peace he deserves.
Your job now, is to look after yourself! You have proved you are a good Carer, put your skills to work, by caring for Alma! There is only one way to grieve and that's YOUR way and at your speed.
What a lovely photo of someone who sounds as if he was a lively, interesting man. Apart from also being a lovely man, my C doesn't have anything in common with Charles. It's a mystery where PSP starts. To me anyway. Hopefully the experts will find out more.
I'm so sorry your darling man has left you but as you say, he is now free. I hope you will now be able to recharge your batteries and start doing things for yourself.
Hugs to you Alma and so nice of you to give so much information , it's always good to compare . I know how sweet it is to feel sublime relief when a loved one passes out of agony, my sister died age 34 many years ago after suffering horrendous pain for 3 years, it was a relief beyond words when she left us. Don't feel guilty , you cared and loved and he can suffer no more x
What a handsome cowboy, rustling traffic across the country side! Thank you for sharing his work history with this site. Coincidentally, I have asked carers such as yourself to help create a study, more of a survey, that could help enlighten us.
As for now, please know that my heart goes out to you and your family. Believe it or not, you have become a stronger person because of PSP. Though it has won the battle, it has not won the war.
AVB
Casting all your care upon him; for he cares for you.
I Peter 5:7
Lo, I am with you always, even unto the end of the world.
Dear Alma - I so liked the title of your post. Yes, that horrible PSP has finally been kicked out where it was never welcome to start with. 52+ years of marriage, wow. Yes, it must feel very lonely now, but you lost the real Charles a while ago. I hope you have loving family and friends round you and I am sending you a warm hug to hopefully brighten your day. I look at the things you mentioned about Charles, his work, the smoking... and it's almost totally different from my dad's life (PSP sufferer). Abirke mentioned to start our own study, to just start writing down essentials before we forget, to see if anything 'clicks'. There must be something common... I'll go find that post now .
So sorry for your loss Alma. It's terribly sad though I can't help feeling a joy for Charles to finally be free of this wretched illness. God bless you xx
So sorry to hear of your sad loss but I can detect a great sense of relief that he is no longer having to suffer this awful disease. Take care and look after yourself. Kate xx
Alma, my sincere condolences to you and your family. My wife was also misdiagnosed with Parkinson's, but it was only one year later when one of the doctors happen to see her in their neurology group and determined it was PSP. Wondering why it took so long to determine Charles' correct diagnosis. Did he see a neurologist on a regular basis?
My wife never lived on a farm, never drank well water, never around much pesticides, and never smoked a day in her life. She was a hair stylist for about 6 years, but prior to that, she was a wonderful housewife, raising 2 awesome children. Often thought her PSP could have been caused by all those hair chemicals that she was around, but I've never heard of an influx of hair stylists getting this disease. But she did have several aunts and uncles who had Patkinson's on her mom's side of the family. But as hidden as PSP is, some of them could of had PSP too.
I enlisted hospice for my bride this week and it was a tough decision, but I'm sure it was the right one. She behaves now like she is comatose, but occasionally will make some sounds and will sometimes squeeze my hand or blink her eyes when I ask her to. I'm praying that she is not in any physical pain. Was Charles' pain from his difficulty breathing? Had he aspirated? Kim's lungs are currently clear, but my fear is she can easily catch something from others. With all the hospice folk coming as well as family during the holidays, I worry she will acquire something rather easily. I'm closely observing everyone she comes into contact, and if they appear sick, I will show them the door (politely of course).
Again, so sorry for your loss. Do reflect on the good times with Charles and do take good care of yourself. I'm sure that would be what he would have wanted.
Ketchupman,going to try and answer your questions.
He was seeing a neurologist on a regular schedule, every 2 months. But he had no clue about PSP. He just kept upping his medication. I finally wrote his first neurologist and set up an appointment and told him I thought it was PSP and not Parkinson's . He took less than a few minutes to determine it was PSP. This was 2 1/2 years later. If I had not had to change doctors, we most likely would have know sooner, the MRI didn't catch it the first time.j
Charles had never aspirated, and they never found fluid in his lungs. With Charles I also worried about something coming in and making it worse, so I had 4 containers of Clorox wipes near entrance and wiped everything down several times a day.mi also had visitors wear gloves and masks if they thought they may have been exposed to anything.
I did forget to mention that there were many times that my husband had been hit in the head. Car accident, loading trucks, motorcycle accident, and clearing out trees, also he was a self taught mechanic.
It sounds like your wife is in the same area of health, that my Charles was at one time. Take notes on changes you see each day. If she starts rubbing or holding her head, that is a sign of pain. This was the only time Charles showed pain. It was 5 weeks from the time he was completely bedridden.
You do what you think is best, at all times. Because unless they are there 24/7 they have no clue as to what is best. I am very heartbroken that I lost Charles, but to be honest I lost him the first week he was bedridden. So I had already started my grieving process.💔
I am sorry for your loss and understand the pain you are now going through as I lost my husband a month ago. The relief of him being free of the disease and knowing I did all I could helps to get through each day. The pain can become unbearable at times. No one can knows what this loss is like until they go through it. I keep busy with friends and family but there is still the times you are alone and the loss comes flowing in. Let yourself grieve at these times no matter how painful it is. Take one step at a time. My prayers are with you.
Such a lovely photo. I'm so sorry you lost your husband to this terrible disease but now it no longer has a hold over him. May you find strength for the days that lie ahead and comfort knowing he is at peace. Lots if live, Nanny xx
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