New to this forum....

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New to this forum....

Postby delle » Tue Sep 20, 2016 10:27 am

Hi There,

This is my first time posting in the forum. I just need to vent. Im hoping to learn as much about PSP as possible, and figured this forum is a good place to start.

My mother was recently diagnosed with PSP. She was diagnosed with Parkinson’s about 6 years ago. But, her neurologist just recently stated he thinks she has PSP in addition to Parkinsons. Her health has deteriorated tremendously over the past year, with these past 6 months being very progressive.

Her first signs were tremors in her foot. She couldn’t stop them. Then, we started noticing personality changes - small changes in how she reacted to conversations or what she would say. She loves to sew. Her stitches used to be perfect and spot on, she would redo anything that wasn’t 100% perfect, and then she became less picky about imperfections and now she cannot sew at all, nor can she follow a crochet/knitting pattern - these are things she had mastered! When she was younger, she used to make her own clothes. I have quilts that she made for myself and my siblings. When I was in kindergarten, she used to make me clothes, and my dolls had matching clothes.

6 years ago, she could walk fine, she had tremors, but they didn’t stop her from walking. Then slowly we started to notice bruises on her arms and legs from falling - too many bruises. Slowly, her walking got worse. She would walk into the side of a wall, or she would walk holding the wall. She would fall backwards, not being able to catch herself.

Before her walking got too bad, we noticed she would make food, and serve half-cooked chicken. Making a salad took her 30 minutes, she couldn’t put recipes together anymore. She insisted on doing everything though, so we let her do what she could. Her speech started to get mumbled and it sped up like she was racing to say sentences. It got hard to understand her, but we were still able to.

About a year and a half ago was the worst so far, of all of this. She took a fall down a flight of stairs. She fell backwards - down 7 stairs. She broke 4 ribs, the ribs punctured her lungs. She was in the hospital for 6 weeks, and then in ICU for a week. The amount of pain I saw her in, was traumatic. I cannot imagine anyone in that kind of pain, ever. She went to rehab afterwards for 2 months. She has since recovered. (we have also since sold their house, and downsized my parents into a home with no stairs, and tons of grab bars everywhere)

Earlier this year, my father passed away. He was battling cancer. At his funeral, my mother seemed like she didn’t know where she was? She just sat there, in her wheelchair, couldn’t open her eyes barely. She barely talked to anyone. She did say goodbye to him, but I barely saw emotion or a tear come out of her eyes. About 2 months later, her legs wouldn’t hold her up. Her doctor recommended another stay in a rehab where she can get physical therapy and round the clock monitoring. She was released to my care after 6 weeks and I arranged for a live-in aid to live with her.

Right now, I started looking at nursing homes for her. She has told me straight out that if she goes to a nursing home, she wants to die. She says she wants 10-15 years more, (she is 65), or she wants to die. How do you deal with a comment like that? How do you talk to someone about nursing home care, etc? She thinks "next year" she will get better and be able to walk again?

I try to look at positive things. She may not be able to sew, but she can teach me how to sew. She can still tell me how to thread her machine and how to use her machine and how to pin fabrics together and how to sew fabrics together. I’ve finished two small quilts for her simply by her telling me what to do, from her recliner. (she was good at starting projects and not completing them. She has a ton of projects to be finished.) She can tell me how to follow a crochet pattern, but she cannot actually crochet. I can ask her direct questions about a pattern, and she can give me the answer. She has more yarn than anyone I know, so I spend my time with her learning all the crafts she used to do so well. I actually love learning to sew. Our next quilt is an unfinished raggedy ann and andy quilt. She loves those characters, so her and I will finish that next. I told her I will design my own quilt and she will help me pick out fabrics, and teach me how to sew an entire quilt together. I use this as a way to keep her spirits up, and keep her excited.

I would be lying if I said I was doing okay. But, quite frankly, I am not. The sewing is helping to distract me from reality. And when eventually she is no longer here, its something I will continue for the rest of my life and always think of her. I’m overwhelmed and frustrated and tired, but I try to keep a positive spirit and positive outlook - I feel like that is all I can do?

Thats my story.
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Re: New to this forum....

Postby Brutus22 » Tue Sep 20, 2016 11:51 am

Hi Belle,
I think you will find some great people here with a lot of information to help you. I read every day and it has helped me a lot in dealing with my husband's symtoms. The lack of emotions is part of PSP and maybe your dad's death was just to much for her to process. It sounds like you are doing all that you can and the little things mean a lot - Mick is no longer walking and his speech and sight are getting worse. He always read the newspaper and cannot do that so that is our morning routine. I read to him while he eats. I think for me it does help to know that other people understand and feel the same frustrations that I do and hopefully it will help you too.
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Joined: Sun Mar 13, 2016 8:29 pm

Re: New to this forum....

Postby myownwoman » Tue Sep 20, 2016 3:27 pm

Delle: Welcome to the forum, but so sorry for your need to be here. Please know that everyone here knows exactly how you feel and what you are going thru'. You are not alone.

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Joined: Mon Jan 27, 2014 3:13 pm

Re: New to this forum....

Postby grandmakcat » Thu Sep 22, 2016 10:51 am

Ditto to what Kate said. I'm sorry you have to be here but please take time to read up on everything you can about PSP here on this site and on the forums. I know for me it was devastating to learn about this disease but a comfort to at least know what I was dealing with for my husband. One day at a time...
Hugs, Ronnie
Husband Dennis 1952-2016 aged 64 - PSP diagnosis 2014 - first symptoms around 2009 / Vietnam vet / Cause of death - complications from PSP; aspiration pneumonia 7/9/2016
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Joined: Mon Sep 08, 2014 2:56 pm

Re: New to this forum....

Postby delle » Sun Sep 25, 2016 10:37 pm

Thanks for your responses. I'm trying to read up on PSP as much as possible and learn as much as I can.

My mom this past week told me she couldn't walk. She can't move her left leg. She can stand, and she can slowly move her right leg but her left leg won't move. She also said she 'doesn't eat as much anymore.' Both symptoms are giant concerns. We have a follow up appointment with the neurologist in 2 weeks so I can let him know these concerns and see what he says.

We had a gentle conversation with her about moving into a long term care facility. (i try not to say nursing home) She hd a hard time with the idea. I'm going to try to keep her at her home for a few more months and then move her to a facility. I feel awful doing this.

I'm terrified that her eating habits are slowing down and its a sign that she is closer to end stage than I realize? Ugh. I will talk to her about feeding tubes and I guarantee you she'll never go for it.
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Re: New to this forum....

Postby Canfieldd2 » Wed Sep 28, 2016 1:34 pm

Delle, I too am new to the forum but sadly not new to PSP. When my Mom was diagnosed in July of this year I immediately started researching this terrible disease to learn as much as possible about it. About 7 years ago my Mom started having trouble with her eyesight. Along with everyone else, I assumed it was just a part of the aging process. She went to several eye specialists and ended up with glasses containing prisms. Over the next couple years my Mom had a few incidents with the car, running over mailboxes, etc. She had to stop driving at this point because my Dad was worried about her getting hurt. Next the falling started. She could never tell us why she fell, just that she fell. Fortunately there were no major injuries, just bumps and bruises.

It was at this point that we decided something was definitely wrong so we made an appointment with a Neurologist in the small town where they live. The diagnosis was Dementia and Parkinson’s disease. She was put on medication for both. Up until two years ago we believed that my Mom had Parkinson’s disease, but didn’t believe she had Dementia because she had no short or long term memory loss. By June of 2013 my Mom was using a cane to get around. She was still cooking, cleaning (as much as she could) and pretty much doing whatever she wanted with the exception of driving. By January of 2014 Momma was beginning to be unable to think clearly or quickly. She had trouble following conversations and her responses were short. She had always been Daddy’s navigator when they went on trips but now she was getting lost.

By July of 2014 my Mom was unable to do much of anything in the house so I hired someone to come twice a month to clean. Since I lived 100 miles away, it was hard for me to get over there as often as I wanted. In December of 2014 my Mom was using a walker to get around. I had to hire someone to stay with her 4-5 hours a day while my Dad was at work because she kept falling. Even with her walking difficulties, my Mom was still in the kitchen Christmas day helping my sister-in-law and me prepare Christmas dinner for the family.

In November of 2015 we realized that my Mom could no longer stay at home alone. The 4-5 hours a day with a caregiver wasn’t going to be enough. My Mom could no longer walk even with the aid of a walker. We hired someone to stay with her 10 hours a day while my Dad was at work. By March of 2016 my Mom was no longer able to even help with transfer from the wheelchair and it was getting increasingly difficult for my Dad to get her into bed, on the toilet, etc. My Mom had gotten so weak she couldn’t even hold herself up in the wheelchair. We had started home health care with PT, ST, and OT coming once a week, along with an RN visit. Only July 6, 2016 I got a call from the RN who strongly urged us to take my Mom to the hospital. She said the decline in her health was happening too fast and she was concerned that something else was wrong. Two days later we were told that my Mom had PSP.

The Neurologist told my Dad that my Mom needed 24-hour care and that if we were unable to get that at home it would be best to place her in a skilled nursing facility. We knew how devastating this news would be for my Mom; this was something she had feared since she became ill. This was a very hard conversation to have with my Mom, but my Dad told her gently and we assured her that we would be there as often as we could. I think she was just so weak at this point that she didn’t have the energy to argue about it.

We placed my Mom in the nursing home on July 12th, 2016 after 6 long days and nights in the hospital. My Dad took 3 weeks off work to be with her and I spend every weekend with her. Once my Dad went back to work he started going to the NH every morning before work to feed Mom her breakfast, get her teeth brushed, and kiss her goodbye. Then he comes back after work to feed her dinner, get her teeth brushed, and kiss her goodnight. I’ve hired a sitter to stay with her during the day while Daddy is at work so she won’t be alone. I just couldn’t stand the thought of her lying there unable to get a drink of water, turn on the TV, or even press the help button if she needed something.

My Mom has almost lost her ability to speak; it’s more like mumbling now and very hard to understand. She is having trouble swallowing and of course will eventually lose the ability altogether. Before she was unable to speak clearly we talked to her about the feeding tube and she said she did not want that. She said when it gets to that point, to let her go. We’ve started Hospice, which was a hard decision but definitely not one regret. Their compassion is endless and they are an awesome resource for information and support. Please don’t hesitate to call them! Many people think calling Hospice means death is just around the corner and this is just not true.

This is by far the hardest thing I’ve ever gone through. I’ve prayed for a miracle; for healing; but I know that the Lord’s Will in this situation may not be healing. My heart breaks to think about life without my Mom, but I know that we’ll be together again one day in heaven; this is what gets me through.

If I could give anyone advise I would tell them to talk openly to their loved one about their wishes before it’s too late. Find out what they want so that you don’t have to make these difficult decisions and wonder if they were right decisions. Help you loved one get their affairs in order; bank accounts, power of attorney, living wills, etc. Having all of this done in advance will ease your burden and help you and your loved one spend precious time together. My prayers are with you and everyone going through this and other terrible diseases.
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Re: New to this forum....

Postby eplowman » Wed Sep 28, 2016 8:54 pm


Welcome to the forum.

What a wonderful, helpful, informative post! Thank you so much for sharing.

How fortunate that your mother in such a time of her great need has a daughter so loving and caring as you. And cheers to your dad, too, for his daily visits to the nursing facility and help for her. What a reassuring testament of his love for her. And how good to hear such an encouraging report about good hospice involvement.

I hope you can keep us updated periodically on your mom. And with your newly learned and fresh perspectives on PSP, please feel free to join in the "fellowship of care and conversation" here!

ed p.
|My wife of 56 years was Rose b. 1930, dx 1999, symptoms from 1997; d. 06/21/08; PSP-rs autopsy confirmed.
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Joined: Tue May 10, 2005 10:22 pm
Location: USA (Northern Va.)

Re: New to this forum....

Postby Canfieldd2 » Thu Sep 29, 2016 3:51 pm

Thank you Ed, I'm happy to have finally signed up. Not happy of course for the reason for it. I've learned so much over the past 3 months about a disease I'd never even heard of until my Mom was diagnosed. It's comforting to talk to people who have been through this and understand. It amazes me how few people even know about PSP. I've even put up information about PSP on my Mom's wall in the nursing home because the staff there assumed she had Alzheimers and couldn't understand or respond to them. They were all shocked when I told them she could understand everything and could respond if they would be patient and try to understand what she was saying. I'm so thankful for this website and an opportunity to talk to people who have gone through, or are going through the same thing. I haven't been able to find a support group here in East Tennessee so the forum has been my support group. Thank you!

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Joined: Wed Aug 24, 2016 10:30 am

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