My mother Elaine, the most beautiful mom ever, passed away at age 72 on February 12, 2020 exactly one year to the day after her confirmed diagnosis. I have not posted much at all, but have gained valuable insight and support from those here affected by this cruel disease. I hope to post again once I am in a better place to provide whatever advice/support I can give, especially to folks in the US.
We are in the Baltimore, Maryland and may have some mobility equipment and other items to donate to a local PSP patient with financial difficulties. Navigating the health care system here can be challenging.
We were able to keep my mother well-cared for and at home (she has lived back with me since my stepfather passed in 2014) with palliative and later in-home hospice care from Hospice of the Chesapeake. We were blessed to have their support which allowed my mother to pass away at home as she wished. As difficult as this journey was, it will always be my honor and privilege to have been her caregiver throughout her battle with PSP.
Michael
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Rembass
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Sad news and I’m so sorry for the loss of your beautiful mother. She was taken too young! Take care of you now knowing that she is at peace and no longer suffering.
Michael, my sincere condolences. We hope to keep my husband at home as long as it is safe for him and me. Happy that your mother was able to pass away at home.
It’s a blessing to know that your Mom is now in peace....your post has given me the courage to continue our plan to keep my husband at home ...like you , I don’t want to live with the regret that I didn’t honor his wishes....it a very difficult journey but so worth the peace that comes after....
So sorry for your loss Michael. You have been amazing to have kept your lovely mum at home and I hope this brings you some comfort. She is now free from this cruel illness.
I liked that you are willing to stay on the forum to help others, when you are in a better place. Your expertise and knowledge of this evil disease will be greatly appreciated. Now it's time to take care of yourself.
So sorry to hear your sad news But your Mum is now in a much better place and finally free of this awful condition. Sending you much love. Stay strong xxx
So sorry to hear of your devastating loss. Losing one’s mother is one of the worst time in life. My prayers will surely be that you can hang on to the fond memories, and let those that were stressful move to another place in your heart.
May I ask what was the cause of her passing aside from PSP....did her heart fail or her entire body just give out??? It’s so sad for me and horrible for Bob, I feel he truly realizes what is going on but can not verbalize what he wants or needs to say 😊
This is a little hard to write at this time, but I hope this may be helpful. Looking back, we suspect my mother was suffering symptoms of PSP for 10 years, beginning with some unexplained falls. Over the last year and half, the falls became more frequent. At this point, we basically took over her health care and jettisoned the various doctors treating her symptoms but whom were never communicating. It took another 6 months until we received a definitive diagnosis of PSP...it was quite an odyssey. She had physical therapy at home, then participated in a variation of the "Big and Loud" program for Parkinson's patients. She did well and I was optimistic we may have several years, but she had a major decline in autumn, then another around Christmas. At that time, we transitioned to in-home hospice as her mobility was gone, she was fighting UTIs and her cognitive issues were increasing. The last four weeks found her having more difficulty swallowing and she stopped eating about five days before she passed. I can only describe it as her brain shut down her body bit by bit until she passed. She did begin to experience pain and increased anxiety over the last weeks. We had to start her on morphine and increased Ativan about four days before her passing, and did our best to keep her as calm and comfortable as possible. We are fortunate she was able to pass at home with her children by her side...her moment of passing was quiet and peaceful.
I always assumed my Mom was aware of things but simply unable to properly express...extremely frustrating for her, I'm sure. Up until a few minutes before her passing, I still made sure to ask if she needed anything and ask her/let her know beforehand everything we were doing, whether it be medicine, mouth swaps, lip balm, repositioning her, etc. We were fortunate in that although she had trouble finding the words, she was able to speak albeit softly up until a few days before she passed.
Michael what a heartwarming post. Sharing equipment with others is wonderful tribute to your mom. I too lost my mom to PSP... Sending hugs oF understanding.., Granni B
I want to express my heartfelt thanks for the condolences and expressions of support from everyone. I'm typically a private, reserved person but knowing the folks on the site have insight into the challenges of this devastating disease makes your love and support all the more appreciated.
In lieu of flowers, we have requested donations within Mom's obituary to include curepsp.org.
She loved camping and going to music festivals with her late brother. We have said he had her lawn chair waiting for her and they are now listening to the Angel Band, together forever.
I lovely kind and thoughtful tribute to your mother, she was a lucky lady to have such a loving son. I too felt privileged to have nursed my husband, it's very humbling to witness the bravery of those suffering from such a terrible disease and changes your view on the world. I hope you find takers for the equipment, we are fortunate in the U.K. In having most equipment provided by the NHS.
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But your Mum is now in a much better place and finally free of this awful condition. Sending you much love. Stay strong xxx
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