My mom was diagnosed with PSP in December 2015. Since the last year things have gotten quite worse. Now, she can't walk without support and we are going to buy a wheelchair for her.
I can't sleep at night - I just keep praying that she gets better! There must be something that I can do!
I know as caretakers we are expected to be strong and always put up a bold front. But there are times when I just can't take my mind off of this. Why did God choose her and not me? I don't want to lose her. I have nobody else.
Please God if you are listening or reading this! Take me! Not her.
Written by
pankaj911
To view profiles and participate in discussions please or .
I am not sure what part of the world you are in but I STRONGLY suggest you get some outside help in ASAP. You are definitely in need of a break from the caregiver role.
It's no sign of weakness or fault of yours, lots of us have used help from outside the home. Being a 24/7 caregiver can easily become an emotional and physical toll.
Thanks Ron! I am in India and I do have a full-time nurse who does quite a bit. But it's very depressing to see her like this. I just wish there was a way to switch places with her. I can't see her like this.
Thanks for replying Ron. I appreciate it very much.
You can't change places, we all know that, but you can help your mom. Make sure she is comfortable, and if the services are available in India, contact them to see what they can offer. Always talk to her, look after her, give her lots of support and love.
Thanks Derek! Yes, I have been doing that - talking to her and comforting her. That's what keeps me going! If she smiles or does something funny, it just makes my day and I tend to forget all about it.
Please stay strong... this is a difficult journey. I am the same with my mum, she is my world and inspiration. Just remember she is still in there!! Take all the help you are offered and take one day at a time. We are only given what we can endure but you need to take care of yourself as well. Sending love and strength to you. ❤
I am sorry I am not God but there are a lot of us who have gone through this and understand your despair. I am so sorry that your Mum is the only person you have. Have you no cousins or friends near you?
You are obviously a very good daughter and love your Mother dearly. Although she is very unlucky to be so ill she is very lucky to have such a loving daughter. I am glad you have help but you need to have a break. Do you ever get out? Just to do something for yourself? If you become ill what will happen then? You must take care of yourself. Get out and have a walk. Go to the market or shops and buy yourself a little thing. You certainly deserve it and it will cheer you up for a while.
Are there any coffee shops you could go to? You could maybe meet a kind person who would be your friend?
One thing you must know. We are all here for you whenever you need advice or help or just friendship. The people here are so kind and will always be here for you. Don't think you are alone because you are not.
Hey Marie! Thanks a lot for your kind reply. I am a guy in my mid 30s...not too old to be called a mama's 'boy'
Of late, I have become a loner and I don't like going out and socializing much. I work from home (full-time). I have a full-time nurse...and even my father (who stays with us) helps a lot.
I have an elder brother who stays nearby with his family. He visits often. My cousins are all married and busy with their own lives. I avoid social gatherings and my friends and colleagues are non-existent.
I used to be a very fun loving person. I used to go every weekend. Now, I mostly go out once in a month. I am never at peace when I am out. My thoughts revolve around my mother and I have an instant urge to return home as soon as I can.
I do agree that I need to have a support system - a friend or two wouldn't hurt. But I just don't feel like going out and facing the world.
Well, I just hope things change for better...
Thanks again, Marie. It really helps to know that there are people with whom I can share my feelings here and those I can trust. I am grateful for the support that people have shown here.
Well you are a very kind "Mother's Boy"! Working at home is a plus but also a minus as it cuts you off from people. I can understand how you don't want to go out to socialise as this happens to most carers.
However you have to change that!! It is very important for your own wellbeing that you have a break from caring. Ask yourself what would happen to your Mother if you became ill? It is easy for carers to drive themselves so hard that they have a breakdown.
So you MUST get out. A once a week break would do you good. Going for a walk and then a coffee is a male as well as female thing you know? The same with shopping! I just bought myself something for the first time in a year a few days ago! You do need to start talking to people. Could you go to see a counsellor? That would help you.
Do they have a Hospice service in India? If they do they are excellent. They would look after your Mother for a week to give you a break. I don't know how far advanced she is of course and that makes a difference.
Anyway we are always here for you to help you get through this. We have all been there too.
Yes, I agree with you. I need to change this and start going out. I do have a backup if I want to go out for a day or two (even a weekend trip). Nurse is there 24x7 and then we have my mother's sister who does come in at times to fill in. She's been asking me to go out and have fun. I guess I am gonna have to start soon...perhaps, a refreshing brisk walk, a movie, or some shopping. Thanks Marie. I'll keep you posted.
If it was possible to change places, would it help your mum to know she had to watch her daughter getting progressively worse until the end? It is so hard watching any loved one suffer but children are supposed to outlive their parents, even though many don’t, leaving the parents heartbroken. You can’t change the outcome, unfortunately, so please try to make whatever time your mum has left, as good as it possibly can be for her. You have a full time nurse which most carers don’t have so, however hard it is, and it is hard, just be the son she loves, speak to her as you always have done, read to her, tell her about your day, take her out when you get her wheelchair, invite friends in to see her and try and make happy memories you can look back on when the inevitable happens. Your mum may have several more years ahead of her, my husband lived for 6 years after diagnosis, my way of getting through those long hard years was to make each day as good as it possibly good have been. Yes I got angry, frustrated and cried but I tried to find something to laugh about with my husband every day and despite it all, we laughed a great deal. I have always thought laughter is the best medicine. I also prayed a lot. Once I understood the nature of the illness, I stopped praying he would get better but every morning prayed we would both be able to cope with whatever hit us next, and we did.
NannaB, much thanks. Big hug to you!! You are right - it's never easy to lose a loved one. Had I been in my mom's place, I know she would have been grieving much more. I pray for her with each and every breath of mine. I try to keep her happy, talk to her about all things possible, and make her laugh sometimes.
Thanks for being there! I appreciate all the love and support. I'm already feeling better by sharing this!
Its always difficult watching a loved one suffer. It doesn't make sense.
All I know is that you have to live with things as they are. The only way to help your mother is by making sure she is cared for [ it sounds as if you are doing that ] and by giving her lots of love while she is still with you. Make the best of now. Sadly, it will get worse so do what you can to make her feel loved.
Thanks for the kind words, Jean! You are absolutely right - it's all here and now. I need to seize the moment and get hold of things...and, do the best I can. Carpe Diem. I am very fortunate to have found this forum with such supportive and kind people. Thanks much! Pankaj
I was happy to read your comments that you felt better after sharing about your situation and the replies. We here, all truly understand and we know PSP is a devastating, horrific disease.
My Dad was first misdiagnosed with Parkinson's when he began having weird vision problems. It took more doctors and more time before he was correctly diagnosed with PSP. He lived with it for about 9 years before he passed last year, May of 2017.
One little thing I'd add to what's been said, is in retrospect, I miss my Dad the way he was all my life, he was my ROCK, but I also even miss the Dad who became to be like a little child as the end of his life drew closer and he was able to do less for himself. At one stage of PSP, impulse control is non-existent and the sufferer can remind you of a little kid acting out, which was at or just before the wheelchair stage.
It helped my grief to separate the healthy dad I'd always known and loved, with the dad who needed me to be the parent/caretaker for him, which I gladly did to the best of my ability. And I think I grieved "healthy Daddy" the whole 2 years that I was one of his fulltime caretakers. That helped when he died, that I'd already been grieving which may be what is happening to YOU, too, because I sure did NOT want to go OUT anywhere. I too, often thought about my dad when I was anywhere away from the home which was usually only to the grocery store.
As your dear Mom's psp progresses, and it will I'm sad to say, you can help her SO VERY MUCH... by coming here and wherever else and asking her doctors for advice because like with a child, about the time you get everything all nicely organized to handle an adult who will fall without assistance 24/7, then a new stage will come and you'll need to know about how to safely transfer her from bed to chair. There are stages to PSP as you've already seen.
I learned so many things about psp for my dad and it was the hardest thing I've ever researched. I could only read for about 15 minutes at first before I'd be in tears for hours. That lasted for months but in 2 years I eventually learned a lot. I make it my mission to say it out loud to as many people as I can.... "PSP" so they've heard of it, so people will care and research can be done to find a cure because, nobody should have to suffer with this. And many doctors know so little about psp, which is why it's important for you to learn because you can be a huge help to your mom and now that my dad is gone, I feel myself being happier and happier that I did everything I could think of to help make his struggle a little less hard.
I'm sorry to get so long!!! I hope any of this helps and you're both in my prayers as is everyone here and who is dealing with psp.
I can relate to your story so very much and it sure seems like you have been through a lot yourself. Thanks for sharing it with me. I loved reading each word of your post. My mother was also misdiagnosed with PD first and we thought it's not life threatening. But when her condition started getting worse rapidly, we consulted another neurologist and she diagnosed her with PSP. It's never easy but we are fortunate to have a good doctor to consult with. She's a very positive person and my mom smiles and even talks when we visit her for a monthly checkup. I am in total agreement with "saying it out loud to as many people as I can" part ...There is absolutely no awareness about PSP (especially, in India, where I live). I just keep praying all the time that she is not in pain because she can't tell if she is. I pray that God gives us strength to go through this. Thanks so much for your wonderful reply!
There are many wise and experienced voices who have replied above.
But there are a couple of things worth mentioning in addition.
You describe the classic situation of a carer who loves deeply.
With many major illnesses friends often drift away. Our time and thoughts, as carers get wrapped up in the care and suffering of the one we love. We go out less and when we do we feel the urge to get home as quickly as possible. It gnaws at us. This is all hard wired into our brains. To stay close to those who are vulnerable and to minimise other tasks.
Next there is a deep sense of loss and with that distress. However with a degenerative disease the incremental losses keep coming. So we never have time to adapt and adjust. Distress levels can remain high.
Do you have a practice like meditation or mindfulness? Such practices can help a lot.
One of my 'mantras' (used in the colloquial western sense) Is:
"It is as it is and that is the way it has become.
I will accept this and work to make it as good as it might be
and let go my fruitless suffering over things I cannot change."
I do hope this does not seem trite. We carers can so often get caught up in moving whole mountain ranges. Whereas we only have one mountain to move. (Humour intended.)
I do hope you come here when you choose. Together we are stronger and you sound like one amazing son.
Hi Kevin, Thanks a million for replying and sharing your mantra with me. I used to practice Zumba before but now I don't work out or anything. I am mostly indoors for most part of the day. I like your idea about practising meditation/mindfulness. Let me give that a shot and I will let you know how it goes.
Just wanted to say that your mother would not want you to be like this! You have to be brave and live the life she would want you to. Be there for her but take some time for yourself and follow a hobby or meet you cousins or friends outside the home - start slowly doing a bit more away from home each day...small steps to being how you used to be. Best wishes
Thanks PDDJED for your reply and encouragement. This really means a lot.
My prayers are with you. My sister was diagnosed in January 2015 at the age of 65. Always a vibrant person (physician) there were many signs in the previous years (maybe three years) of 'something going on differently' with her. Now she cannot walk, mainly in wheelchair and bed, cannot write, read, has little use of arms and legs, her manual dexterity is almost nothing, has trouble with swallowing, coughing and gagging and her vocal is very quiet. She is very restless which leads to anxiety and exhaustion. She is on limited medication since they had so many side affects. We have seen a rapid decline just since Christmas! I pray that she has peace soon. This is no life for anyone. She decided to enter Hospice a month ago and now just comfort and care is what she has. She does have 24/7 care plus our family, since she has no husband or children. We make the most of of time with her. She still eats if she feels hungry but rarely drinks liquids. We and she is fortunate to have the financial resources to have help. I was seeing her everyday but now five out of seven days is plenty. I live only four minutes from her assisted living apartment center. You take care of yourself.
Thanks for sharing, Tina. My prayers are with your sister. Let's hope that the Almighty is kind to all those who are suffering from this horrible disease. Peace!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
PSP Brain or Railing at the Gods?
No cheeseburger for you! Remedies please!!!
Honestly...you couldn't make this stuff up...
God's Will Be Done
