When will the suffering end😢

[Careenh]

Spent the day with mum. Took her out in her wheelchair as walking is almost impossible now. She's in a catatonic state most of the time now. The hardest thing for me is not being able to understand her any longer. Speech is pretty much non existent. She crys and howls a lot which is heart breaking.. . I think it's the frustration she is feeling. When will this end... I can't bear the thought if her suffering😢 I think we are entering the final stages... I just don't know. Xx

[humphers]

Careenh i feel so much for you.........it's a stupid platitude but we've just got to keep on as well as we can,...... XXX

[Karynleitner]

Chris, I sometimes feel the same way. Then I feel guilty. Next I want to cry thinking that the only way to end this hell is to lose my dear sweet man. It is just So hard.

What is most frustrating is that he does not speak more then about 10 words a day. When he does, his voice is clear, but he admits speaking is difficult. I wish I knew what he wAs thinking., or if he is suffering . I wish we could share memories and stories of our years together. Sometimes , it is like I lost him already

[Althea-c in reply to Karynleitner]

So sad for you. Now and then Barry will be coherent then nothing for days. My husband is sweet and says thank you for everything.

Much love

[doglington]

We are all in that place. No-one can give us answers. Its beyond endurance but we do endure it. Watching our loved ones suffer and being helpless is awful.

Sadly, it is happening all over the world.

Stay strong, Careen. love from Jean x

[KatherineParr]

Careenh,with PSP your mum will know she's trying to speak and can't. Give her as mu h comfort as you can. Tell her you understand. My husband could tap on a table or give a thumb up for yes or not tap for no. See if you can get some form of communication. all you can do it try and to be there. So cruel for our loved ones and those who love them. Xxxx

[Ratcliffe]

With David when his voice went, we used the thumbs up and down for quite a while with good success. After he had a fall and damaged his good arm so that he couldn't manipulate the hand properly, we resorted to give a little squeeze for yes. It worked pretty well, albeit frustrating for David, but it did stop him getting agitated with frustration at the constant I'm not sure what you mean...

[LuisRodicioRodicio]

PSP is a disease without pharmacological treatment. The only thing you can do is counteract the symptoms.

In few words these are my experiences on PSP disease hoping they will be useful :

The non-strictly medical parameters that the main caregiver must manage:

1) Avoid falls: transfer techniques, seat belt, wheelchairs, to adapt the bathroom, handrails on each side of the bed, articulated bed, plastic wheelchair (type ETAC) special for hygiene and shower, etc.

She has regularly used a wheelchair since June 2016 (Four years after first symptom) . The wheelchair is made in aluminum and is foldable, easily transportable in the trunk of a car .

2) Prevent cold and flu (vaccine could be advisable) to avoid pneumonia.

3) Prevent solids or liquids from reaching the lungs. Add thickeners to drinks. Relatively doughy food and solids in small pieces. Ice cream are well tolerated .

4) Gymnastic tables 6 days a week: passive in bed (Move all major muscles) and active (helped by 1 or 2 people): Go up and down 50 steps, walk 200-300 m, speech therapy exercises, exercises ocular muscles. After that he needs to rest at least 30 '

5) Socialization. Almost every evening, social activity: cinema, city walk, show, museum, conference, visit grandchildren, snack with friends, etc. After that he needs to take a rest. It is advisable to have holidays in places where the moderate climate allows you to go out on the street and do walks-gymnastics as well as socialize. The transport by car is adapted to take the patient and the wheelchair. Similar Citroen Picasso tall seats are recommended. .

5) Control of palliative medication against depression and insomnia. In our case right now: 1/2 Sertraline-50 at breakfast; 1/2 Sertraline-50 to food; 1 Lorazepan-1mg one hour before dinner.

Drops of tear to the eyes upon request. If you have problems applying the drops "Optrex spray" is an alternative.

6) Communication:

There are magnetic letters of scrable (20 x 20mm, if they are bigger, better). We put the letters of the alphabet in a metal tray (may be worth one of the oven) well illuminated and placed at eyes level. She is pointing the letters and another person is writing on a blackboard the letters that she points out. Until now it is the best system.

To say yes or not she uses head movements.

We have a part-time hired person to perform gymnastics, personal hygiene and dressing. Another person lives with us with holiday on weekends free. Those two persons help me a lot regularly and the children help whenever they can. Also the friends of always collaborate.

Various medications have been tried for pain episodes. There have been some side effects such as confusion and daze, especially with opiaceous. Currently when an episode of pain arises we use progressively: Paracetamol, Nolotil in capsules and if the pain is acute Nolotil in glass ampoules. All under medical supervision.

Our plan has been designed and adapted simultaneously by the neurologist and the family doctor. In the small occasional doubts or small urgencies we are guided by a relative who is a doctor.

We found great help information In the comments of the members of this great association -HealthUnlocked- and also the web "CurePSP": psp.org/ has been of big help.

Releasing the caregiver and allowing him / her to have life outside the home as well as to avoid strong or continuous physical and psychic efforts is fundamental. The main caregiver of a patient of PSP is progressively taking charge of the work that did when the disease had not been shown, plus the work done by the patient of PSP, plus the management of the illness and the people who are forming the team of help. One must also look at the health of the main caregiver is and his/her medical history.

The bottom line is that jobs and occupations of the main caregiver grow at the same time as age is going up ..... without an important help is very difficult to carry out without a brutal wear.

From my experience and also from my group of caregivers it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregiver, far away from the PSP. At least, a week of holidays each six month is advisable.

I hope and I wish these notes are useful.

[Karynleitner in reply to LuisRodicioRodicio]

Thank you for the detailed report. I will continue to refer to it. Unfortunately , sometimes my husband has a hard time communicating , especially when he’s tired. It can be difficult to even get him to nod his head. He is able to form words and his voice is clear, but he cannot seem to get the thought out. Very frustrating for all of us,

Thanks again for taking the time to note your experience .

.

[LuisRodicioRodicio in reply to Karynleitner]

I confirm that in our case when she is tired and especially at sunset the communication becomes more difficult.

I found a lot of help and understanding in this chat, I try to contribute of what I founded when arrived and I meet in the chat every day.

Hugs

Luis

[Marie_14]

Careenh I am so very sorry. How heartbreaking for you? You are a good daughter though so hold your head up.

Losing speech is the worst part of this. When my husband couldn't communicate anymore it was just awful. It must have been so much worse for him though? I often think if the day he couldn't spell out what he wanted. It was so upsetting.

Love and hugs to you.

Marie x

[Kevin_1]

Careenh

We're but one step behind.

More and more we use thumbs up or down (yes, no) and i start with suggesting areas... Like how you are feeling, food, symptoms, worries etc and we focus in from that point... get the heading and focus in.

It works and it takes fewer questions than I would have imagined.

You might be past that stage, I am sorry if that is so.

Things that matter to my Liz are being told that everything is OK, reassuring her she is loved and that the care is still working and she is to stay in our home and a daily report about the ever changing behaviour of her cat.

Talking to her fills assuages so many of her worries. Asking her if she loves me still gets a thumbs up and lets her express that... followed by a long hug.

Seeing someone we love slip in to enforces silence is heartbreaking.

I have tears in my eyes a few times a day.

Warmly and echoing you.

Kevin

[Kevin_1]

Adding - She holds a single finger up if she likes the food I make... The other day she held the finger up in the American manner of being rude when I asked if it was OK... The carer almost choked to death with laughter and Liz managed a wink.

Its the little things.

[doglington in reply to Kevin_1]

Its the humour that keeps us going really !!!

[Cuttercat in reply to Kevin_1]

Yep Charles did that too!!

Cuttercat

[Katiebow]

So difficult to decipher what Ben is saying to me but bless him he keeps trying. I find the communication thing the most difficult aspect of this awful condition, I leaves you feeling totally isolated within your relationship. I had my son and his family over this weekend and it's heartbreaking to witness Bens isolation even when you try your hardest to include him. Heatbreaking is th only sentiment that fits the bill, the grandchildren don quite know how to react to 'Grumps' permanently in his riser/recliner chair, unable to speak, hug and kiss them. On how I hats this Sh------y disease.

K xxxx