Important Tips / Lessons Learnt in Life & Death of Mom with PSP

[abilitydesigns]

This forum has been my single best silent support & resource in my journey caring for my mom with PSP. I can't thank enough the amazingly kind members on this forum.

My beautiful, strong mother, diagnosed in Oct-2014 (symptoms started 8-10 months prior as slurring of speech), passed away peacefully at home 27th Nov, 2018 amongst all the family members (her first & final aspiration pneumonia episode & things went from EXCELLENT to END in a matter of just 2 days)

For those new to this diseases, my advice would be to gain as much knowledge about the disease & the caregiving as possible because many of the GP's / doctors may not be fully aware of this rare disease.

Following are some of the tips for dealing with PSP for those new to PSP. I hope someone finds them useful.

INITIAL STAGE:

1) Get a head protection gear ( we used headbuddy - headbuddy.com.au )

2) Install grab bars in bathroom/toilet ( Amazon )

3) Put corner guards on sharp edges of tables, etc ( Amazon )

4) Engage a good physiotherapist, focus on Breathing exercise using Spirometer (Amazon)

5) Engage a good speech/swallow therapist to learn swallowing techniques

ADVANCED STAGE:

1) Get a height adjustable, multi-position hospital bed (remote control operated )

2) Get a recliner wheelchair ( Amazon )

3) Get a pulse oximeter ( Amazon )

4) Get a portable suction machine ( Amazon ) ( VERY imp)

5) Learn how to give a chest PT, back PT and shallow oral suction / deep oral suction (be very careful not to cause mouth ulcer, especially while doing deep suction)

6) Anti-decubitus Air bed mattress for preventing pressure ulcers ( bed sores )

7) Nebulizer ( online medical store ). Helpful in clearing cough/chest congestion relief

8) Prism Glasses for watching TV from bed ( Amazon )

9) Soft cervical collar ( Amazon ) to prevent neck tilting backward & provide support

10) Wrist/elbow splint with velcro in case elbow/wrist is bent ( Amazon )

11) Bedi shield to open mouth during oral care (bedi shield website)

12 ) Prepare a large drawing book with commonly used words, grouped into logical categories that the patient can place a finger on. I also bought soft alphabet blocks (Amazon)

Engage a nutritionist, preferably with neuro-degenerative diseases specialization. This is helpful for PEG feed/food content optimization

NOTE:

1) Ask the patient for his/her wishes on PEG tube feeding

2) Do remember that even with PEG tube feeding the patient can aspirate; typically in the very advanced stage of the disease. Lil pleasure eating by mouth IS possible even after PEG

3) There is no right or wrong in PEG tube choice when even pureed food/liquid intake becomes very difficult. Ask the patient for his/her wishes.

Personally speaking, Thanks to PEG tube i got 1 full additional year with my mom to make memories with, which, without the PEG tube, i'd not have received otherwise.

Also, for approx 6 months after her PEG tube, we could give her lil qty ( eg: a tablespoon ) of ice cream, pureed sweets, etc for pleasure eating.

For the first 6 months after PEG feed, mom had almost zero choking / zero aspiration.

END STAGE :

After approx 8 months after PEG was installed, she started choking almost every day, multiple times a day, but thankfully I had the most amazing PSP nurse who was expert in using the oral suction pump & thus my mom never had any aspiration pneumonia, no UTI, any bed sore, etc.

For the last 2-3 months, she could not say even a single letter, let alone a single word.

In the last 3-4 weeks, she'd start choking on saliva even with just 5 minutes of sitting and needed to be suctioned, often deep oral suction.

In the last 2 days, she aspirated almost non-stop, even in deep sleep, her lungs were full of fluid & she had aspiration pneumonia. The doctor suggested hospitalization for a tracheostomy/venti along with aggressive anti-biotics treatment which i refused saying no more tubes inside my mummy.

Kept mom at home, rented a portable oxygen machine. Kept her sedated & pain-free with the medicine prescribed by the doc & given via IV drip at home. She went peacefully 24 hrs later surrounded by all the family members as we all watched her breath her last.

Be patient & gentle with your words/actions. God Bless you all !

~ yatin

[Dadshelper]

I am very sorry for the loss of your mom. That is a very good timeline and actions taken. I would have to say you did everything possible for your mom.

Ron

[carehope]

Very sad to hear of another fine person who suffered from PSP. My condolences to you and your family. The care and caring are what makes all the difference and it's obvious that yours made all the difference in your mother's quality of life. It is wonderful that you have the capability and the wherewithal to have provided for your Mom so effectively. She was blessed to have you and it's obvious that the feeling is mutual !

I also would like to thank you So much for taking the time to provide a comprehensive list of specific recommendations regarding interventions and equipment that can serve as a valuable guide for caregivers, starting from the time such conditions first manifest and continuing as the illness progresses. It is an invaluable help to many who are trying to anticipate what may happen going forward and also have concrete suggestions so they can be at least one step ahead and provide effective and meaningful solutions ; preventing unnecessary suffering where possible !

Thank you again for such a meaningful contribution at such a sorrowful time !

Take care and be well,

Elise

[JodiP]

Thank you for this list. I am new to this and appreciate all the help I can get.

[raincitygirl]

Dear Yatin,

I offer my condolences for the death of your dear mother - a deep life-altering loss. I'm grateful that her death was peaceful, and think it is a gift each time a member shares that experience with us. It calms one of our major fears.

Thank you also for the great list of tips : a legacy for our great HU library of posts

XXX

Anne G.

[Dickwin]

My condolences to you and your family. And thanks for supplying us all with such hard earned and detailed list of items to keep in mind.

You did great by your Mom.

Warm Regards,

Dickwin

[enjoysalud]

THANK YOU a very thorough list of items, and especially for siting where they can be bought.

I am sorry for the loss of your mom. I can relate. I lost my 55 year old son to PSP on May 4, 2017. Prayers of comfort go to you.

Margarita, Los Angeles, CA, USA

[hubetsy]

Please accept my heartfelt condolences. What a beautiful and thoughtful post.

I lost my husband a few months ago in October and wish I had this list of tips as I worked my way through the past several years learning by trial and error and with tips and suggestions I learned from friends in a support group and from this site and occasionally even from professionals.

I especially liked your closing lines. Truer words have not been written.

[bazooka111]

I am so very sorry for your loss. I am beyond grateful for you, and the time you have taken to offer this invaluable insight. So grateful for this. x

[SewBears]

I’m sorry for the loss of your mom. She was lucky to have such a kind and thoughtful caregiver. Thank you for providing a list of items to have on hand and for helping us to learn what to expect. I don’t think I’ve come across anything with this much detail all in one place before. I really appreciate you taking the time to educate us during such difficult times. I hope that you continue to stay in touch because I think this forum has a way of healing us, just by tuning in sometimes. Please accept my deepest sympathies for your loss.

xxxx from I SewBears

[Hidden]

I'm so sorry for your loss.

Your list is amazing and would be a great help to all those who are new to PSP.

I think the PSP Association would do well to put this up on their site, as we have all been desperate in the past to have something practical like this to help us on our tough journeys, both as a patient and a carer.

Your mum would be so proud.

Thank you.

Sue x

[Cuttercat]

Your care and professionalism are to be commended. They will help others in her name. Bless you.

Cuttercat

[daddyt]

I'm so very sorry for the loss of your mom. Although she could not communicate, I'm certain she heard everything around her. I think she would be proud of the efforts you towards her comfort and care.

Tim x

[Tippyleaf]

So sorry for your loss. Thank you so much for shari g such valuable tips. It is so often carers who are the experts in managing these complex diseases - so many of us will benefit from your expertise.

Sending lots of love to you at this difficult time

Tippy xxx

[Baytalon]

As painful as this was to read, I thank you from the bottom of my heart for your honesty and clarity in letting me know what to expect in the future for my husband. Bless you for your kindness, and bless your dear mum who is now at peace.

[Richard33]

Yatin,

That is some of the best and most practical advice I have seen on here. I will print it off. You clearly did a really fine job of looking after your mother and that is the work of a true angel!

Richard

[jamesmoffat]

you did your very best in extreme crcumstances and no - one could ask for more--my heart goes out to you

as a patient rather than a carer i guess im till in the early stages alhough ive had PSP for about 4 years-- your list frightens me in terms of the likely progression of my symptoms

[Nanny857]

So sorry your mum has passed away but now she is free from the evil PSP. I have to thank you for thinking of others at this time and listing tips for us carers. They have and will help me. Take care of you now. Lots of love, Nanny857xx