Mom's Journey

[christie329]

Hi all. I haven't been on in a while. Last month, my mom with psp fell and broke her pelvis. After hospitalization, she was moved to a rehab facility. It seems as if the injury and trauma of it have sped up the disease tremendously. We are deciding between two long term care homes for her to live. Unfortunately, she cannot come home. She was using a walker-slowly-but using it at home with a 24 hour caregiver. The fall happened when the caregiver was off and it was just my parents home together. Now she is in a wheelchair, cannot toilet, eat, drink, dress, etc for herself. She needs assistance with every daily living activity. Since the fall she is also leaning greatly to the left side. Her neck is always tilted and she cannot raise it straight. Her strength and grip of most any object is so difficult for her. She gets speech and physical therapy daily. She keeps saying she wants to go home. It is just heartbreaking for us. Does anyone else have experience with a serious fall/injury and anything related to this? We are fearful that this has brought her closer to the end of her life. She can barely talk, was put on an IV for dehydration, and has an aide with her to assist at every meal. Thanks for reading. Any words of advice, encouragement, experience, etc are welcome. I hope all of you are doing well and have wonderful people by your side to lean on.

❤️

[Zerachiel]

Hi, yes I have experience of this, my wife who I am in hospital with now for the third time in a 12 months with Pneumonia and she also broke her hip and clavicle last year too.

Each time the PSP symptoms increase, at the moment she cannot lift her arms, she can just squeeze my fingers to answer yes which she couldn't yesterday, she can't do hardly anything else and her head drops down so her chin is on her chest.

On the positive side, in the past she has regained a lot of the things she had lost although not all or not the same as before, this is her new base line. It can take months for some things to come back.

Keep working with the physio, make sure anybody working with her know her limitations and risks like feeding her slowly and making sure her mouth is empty to avoid aspiration. Do not expect everything back but work towards a compromise that gives her some quality of life and sense of independence and achievement.

When we go home, hopefully next week, we will be starting the same journey as you for the 4th time, only time will tell where we get to this time.

All the best

[christie329 in reply to Zerachiel]

Hi Zerachiel, thanks so much for sharing what's happening with you and your wife. I appreciate the tips and advice. Guess we have to just take it day by day. Thank you again and all my best to you and your wife.

❤️