Difficult question about the end - PSP Association

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Difficult question about the end

mattnkatsmum1
mattnkatsmum1

Not really sure how to ask this because I know everyone's experience and the progression of PSP is so different, but just wonder if anyone has experience of symptoms similar to my mum and how we might know when the end is near, or how long away that could be. I realise as I write that no-one can answer that, but please, if you will, indulge my ramblings.

Mum was only diagnosed last November after 3 unpleasant falls (each resulting in a break - the last one completely snapping her femur in two). 18 months ago, she was mobile, eating, communicating, etc. but we knew something wasn't quite right and she was (mis)diagnosed with dementia.

Her deterioration was rapid. She is now doubly incontinent - though still uses the commode when we can get her there in time; is completely unable to walk or stand; she has a hoist and needs two carers to move her; and her communication is limited to single words 'wee', 'poo', 'drink', 'yes' and 'no'.

She is on soft foods only and chokes on drinks sometimes, but her swallowing is ok, and she has avoided any chest infections so far.

As everyone here will know, day to day life is pretty grim for my poor mum and lovely dad who is mum's main carer. That said, I have been lucky in that she has a great neuro-nurse we have CHC for which we had no battle, and having had some atrocious carers, we now have some lovely ones who are making a difference. They come in twice a day for a couple of hours.

Bearing in mind, what I said earlier about her speech, Mum has now started forming a sentence, which is 'I want to die'. She started this a couple of weeks ago and is saying it several times a day. She is still eating, so hasn't turned her face to the wall, so to speak, but it is so terribly distressing to hear her talk this way.

Mum is 82. When I asked her neuro nurse about prognosis, she said 7 years from diagnosis on average, which isn't really helping and can't take into account late stage diagnosis and age.

I find my self praying for an easy release for my mum, coupled by the most awful guilt for feeling this way. I love my mum so much and know when she passes my dad will be devastated.

Sorry for the ramble. It's almost cathartic to just write things down sometimes. I find it so difficult to talk to anyone about this.

Karen x

38 Replies

Good Morning Mattnkatsmum

This is a safe place to ramble on. Sometimes it is good for us to ramble on a bit and I believe writing to be very helpful with getting our thoughts together. My mom passed in 2012 and my heart goes out to your mom and loved ones during this stressful time.

As you already know every person is different with PSP. So I cannot be of help in answering many of your questions. All I can say for sure is that it important to take care of yourself while caring for your mom and dad. Best Wishes for your day . . . Sending Hugs - Granni B

jillannf6
jillannf6 in reply to Motts

Ii understand what you are saying. i decided that i would stop eating and drinking nearly two years ago. but was persuaded not to and i have had two christmases and another one to follow in 2018, so i am pleased that i listened to my partner and friends .

love jill

Bless you. Thank you x

NannaB
NannaB in reply to jillannf6

You are amazing Jill. Is your partner helping you type? I’m pleased you listened to your partner and friends if you have been able to make happy memories during the last two years. You were the first person to reply to my very first post and told me about the on line parties. They were so much fun during difficult times.

Sending you a great big hug and kiss.

❤️💐 XxxX

So glad you are still with us Jillann - you wouldn't believe how often we scour the postings and likes, checking that you're still checking in with us!!

You are one of our Big Inspirers - Live on!!

XXX

Anne G.

Robbo1
Robbo1 in reply to jillannf6

Jill lovely to hear from you. You are an inspiration to all. Rx

Hi, Jill! I haven't been able to get the message thing to work, so I'm writing to you here. I saw you were on the site by a "like" you just gave me. I just want you to know I think of you often and love you to pieces. How are you, dearie?

Sarah/Ec

mattnkatsmum1
mattnkatsmum1 in reply to Motts

Thank you. Just knowing we're not alone helps so much x

My darling your asking the million dollar question that I’ve asked myself every day for the past 2/3 years.

1) don’t feel guilty for how you feel

2) it’s normal how you feel

3) I dont have the bloody answer except I’m told it will happen when it happens

Huge hugs to you, I get you totally, but wish I didn’t x

Huge hugs to you too x

Reading your post helped me remember I am not alone for having these feelings. Sometimes the guilt of feeling that way is so overwhelming. I hope you find comfort in knowing you’re not alone. As for time, I find the prognosis of 7 years after diagnosis pretty much useless with this disease. There are so many variables at play. Just this week my dad had feeding tube placed, signed up for hospice and had code status switched to DNR. He was diagnosed December of 2017. The hospice nurse who qualified him said she has had patients end up being on hospice for over a year, she also added that in his condition she does not foresee that for dad. Here comes the guilt part, that brought a sense of relief for me. Hang in there and remember you are in this fight along side your beloved mom and only want what’s best for her. Hugs!

Thank you. It’s a lousy club to belong to, but it helps so much knowing you’re not alone.

‘Much love. X

Dear M...I totally understand what you describe as I was in the same situation and you are quite aware that every case is different. My husband had most of the symptoms you described but was thought to have CBD. I was told 6-8 years but after a severe fall and rapid deterioration, he passed after 2 years since diagnosis.

Just no way to know so enjoy what you can today with your mum.

I also felt the guilt for wishing he would be in peace and not suffer but in thinking about that, it was the most loving prayer I could say.

My heart is with you and your family.

Hugs, Liz

Thank you, Liz. I agree that trying to enjoy the time is so important.

Much love, Karen

Welcome, Karen!

These same thoughts were my prime reason for joining here.

I had the feeling that doctors were way out in their time predictions. You can read my husband's journey if you touch my emoji and see his journey and our struggles.

I found a video helpful by Barbara Karnes a Hospice nurse. Other comments here helped me gain confidence that I was right and they (the doctors and professionals!) were all wrong when they discussed timeframe.

Your mum has got to the point, I think, when an infection of any sort may well change her situation. Pneumonia, possibly aspiration pneumonia, is often the most likely. This happens when the swallow reflex does not always work properly and food goes 'down the wrong way'. You can hear gurgles in the right lung, and not necessarily in the left side.

With catheterisation, there is always risk of infection, and has been noted here when patient has shown signs of unexplained fever, dementia.

There is also a very recent story of a loved one refusing food and drink as s/he did not want to live.

You sound as if you are doing all you can to love and care for your mum, and have a good caring community around you all. Your mum is still able to communicate which a great blessing!

Any of the above will hasten death, or life continues as it is, and no better, on a knife edge.

You have described what to me sounds like 'end of life' phase. Good care will prolong, mediocre care (God forbid!) will likely shorten it, or your mum may decide to stay in control of her future. Either way, you need to accept all of this! And that is very hard to do!

Talk to your mum and the family, show your love to your mum as much you can, and tell her you understand. Take this time, while you have her still with you, to remember the high and low points of your life together, plan her 'celebration of life' together, bring her friends together while she can talk, make this time memorable and close while you have her.

With understanding between you, whatever happens can be easier to handle. Although you will still grieve, you may find peace in the knowledge that you understand each other, and that you have done the best you can to love and care for your mum.

You are a good daughter, doing everything right for your mum. These feelings are normal!

At a time like this, I had no-one to turn to, except on this site, and that helped me understand that my gut feeling was probably right. He had eaten very little in the last few days, and I recognised the loss of swallow reflex before the nurses, and, because of my knowledge gained here, I requested a suction machine which eased my love's coughing overnight until the doctor came to assess him in the morning. She stopped all by mouth, put in a line for drugs to ease coughing, and said he had a few days at most. My love's last words were to ask if I would be OK. He knew his time had come and was peaceful.

I hope some of this helps you and your mum along this sad path.

Huge hugs!

Jen xxx

Thank you, Jen, for such a honest and thoughtful response. I will read your husband’s journey as you suggest. Productive time with my mum is my priority now I realise, and I think the other thing I am realising is that to some extent mum has some control. She’ll know when she really has had enough.

I can only imagine how hard it must be to write like this following your loss, and I am so grateful to you for doing so. It has helped a lot. X

We were told 5-7 years and it was exactly 6 years after diagnosis that my darling decided he had had enough and no longer wanted to be fed using the PEG. With the GP’s knowledge, after he had questioned Colin to make sure he knew the outcome, I stopped feeding him and just sprayed his mouth to keep it moistened. It was the most peaceful 11 days we had had for years and he was able to squeeze the hands of everyone who came to say their goodbyes until two days before he left me.

We were in a slightly different situation as for 10 months Colin could only manage tastes of ice cream and yoghurt and it was his decision to have the PEG fitted. If your mum is still eating and drinking she will continue to live, maybe for several years. Perhaps you could tell her about Jill’s post. Perhaps not putting the idea into her head about refusing food but that her loved ones gave her the will to carry on living and she is pleased they did.

I do believe we should grant our loved ones wishes. I know I would probably feel as she does but if she can still eat, her body probably isn’t ready to go yet, even if her mind is. Whatever happens next, don’t feel guilty.

Sending you a big hug.

XxxX

mattnkatsmum1
mattnkatsmum1 in reply to NannaB

Thank you, NannaB. You have made such a good point about respecting a loved ones wishes and it was humbling to hear about Colin’s final days. My son is a doctor (albeit one who knows little about PSP), and spent some time working in an hospice. I remember him saying that people can live well and die well and I try to hang on to that as we come to terms with the inevitable.

Bless you xxx

My son's first first symptoms (DOUBLE VISION, slurred speech, anxiety) appeared March, 2014. They occurred after a huge R&B concert where my son was the bass player in the house band. At the time he was a few weeks short of 53 years old....he was 52 years old. He had Kaiser Permanente health insurance. We live(d) in Los Angeles, CA, USA. In the states we pay for everything concerning health unless you are below poverty level or receiving age 65+ years Social Security. Kaiser was excellent in running every test imaginable.

January, 2015, he was DX (after several mis-DX) with Parkinson's (not Parkinsonism). He continued deteriorating, his handwriting was so small as to not being able to read it. At the time his day job was as a math teacher with Los Angeles Unified School system to support his love...playing the bass. He looked into retirement. He was told he did NOT have enough years for health coverage and his pension would be less than $1000 a month. He should apply for Disability. He started taking full time sick leave Feb 2016. June 2016 his sick leave ran out and he qualified for Disability thro the state of Ca, but he would have to pay his own health insurance (thank goodness for Pres Obama and the ACA).

Starting mid 2016 he was experiencing swallowing problems. Nov, 2016, he got his first bout of pneumonia taken care of with antibiotics at home

Jan 2017 he was re-DX with PSP. March, 2017 his second bout of pneumonia appeared which put him in the hospital for 7/8 days. A PEG was installed. He came home and thrush of the mouth, bed sore, seizure, severe constipation, loss of being able to get up without help, loss of speech except the use of his thumb and pointing to communicate, plus more, THEY ALL CAME TO VISIT HIM. He requested to NOT be fed (all with gestures) and pointed upward to heaven. April 30th was his last PEG meal. May 3, Kaiser hospice stopped water. My son, age 55 years old, died on May 4, 2017. His story can be read on my post PARKINSONS TO PSP.

It has been approximately 16+ months since I lost my son. I have found the 2nd year to be more difficult than the first. Yes, there are less tears, but for me far more pain. I miss my son. He was so exuberant with the love of life and learning and kindness to his fellow man.

Grief like PSP is different for each. I regained my life, but I lost my son.

The issues you are grappling with I find reflect the "values" we each hold. We really don't know which value of ours takes priority until life confronts us with THAT question. We think we know, but not really. Those values have been formed by our family, our religion, our culture, out friends, etc, and not necessarily in that order.

I honored my son's request to NOT be fed, and Kaiser honored his request. I believe that we should be able to choose, when possible, how we choose to die. I realize that the person who has died no longer suffers, but those of us living do. We live with the memories and the ache.

I believe that grief brings not only pain but guilt (I should have done this, I should not have done that, I should have tried this, I should have followed what I was asked, I should have NOT done what I was asked). My son asked to stop being fed, asking a hasten to death.

Many believe that death should be kept away, trying everything including life support. I think it is human to want to choose our needs/wants over the wants/needs of the person dying. For a good year after my son died, I wrestled with "why didn't I talk him out of not eating....telling him to wait a few weeks...and then decide?" Now, over a year plus, looking back I am at peace with honoring his request. A few weeks more would have only caused (I like to think because I don't know) more suffering/pain.

I believe there is no answer to what we ask. PSP is uncertainty. Uncertainty is the most difficult of situations to live with....honoring our loved one's wishes when opposed to ours..is probably as difficult.

I send prayers wishing you peace in your heart.

Thank you so much for taking the trouble to reply. My heart aches so much for all you have gone through. It’s so hard to deal with my mum going through this, were it my child it would be unimaginable. Strangely, I feel so much comfort in reading about the end stages. Whilst it is dreadful to consider, an acceptance of inevitability is part of the process, and hopefully when the time comes, we’ll cope.

So much love to you.

Karen

Dear Karen,

I only add my voice to the others telling you your feelings are the most natural in the world - they don't mean you don't love your mum, you are selfish, or anything else except that you are tuned in to her acutely, and you want the freedom she longs for. And when you ARE just feeling for yourself: that you may feel frustrated, trapped powerless, can't make the 'right' thing (healing) happen, can't make the worst alternative (death) happen...THIS IS NATURAL!... It is un-natural to live in misery, tension, sadness, longing, without wanting it to end - and we are told constantly "no cure no cure" - so how else is it possible to feel?

We have all been there Karen - we truly understand, and reach out across rhe miles to give you a big hug! XXX

Anne G.

Thank you, Anne. Your words have given me so much comfort.

Dearest Karen

You are not rambling at all. The questions seem to multiply each day/week.

I lost my much loved husband at the end of November last year and I believe his diagnosis was late and even if it had been earlier the disease ruled our lives.

There are few answers for PSP. We did our best to cope. Unfortunately each time Les was poorly it took more of him each time and there was no going back. It's the most vile illness.

My heart goes out to you all. There are no rules for each diagnosis. Give your dad a hug and your mum as I know what is happening is so hard for all of you.

You will get so much support on here.

This site helped me so much and the horrible thing is that I still need that support but try not to ask. I know you should get answers, as far as anyone can help you. It's such an unpredictable road you are on. Just make the most of still having your mum and she will know how much you

I am so sorry that you are on this road. It's so tough.

Love and hugs

Pat

Oh Pat. My heart goes out to you. I’m so sorry for your loss and so grateful you took the trouble to post. Finding this forum has been my saviour.

Thank you, Karen xx

So, i’ve Just read all the responses carefully, and it has been very emotional and so very touching that people who have endured this dreadful journey and lost loved ones have taken the time and trouble to provide words of comfort and such invaluable advice.

I did feel a bit self-indulgent having hit the send button, but you have all helped me with the guilt, which is not a pleasant cross to bear.

Thanks to all. I am beyond grateful.

Karen x

Dear Karen, I lost my husband in May this year, three and a half years from diagnosis. The last few months he went downhill very quickly. He had an 'Advanced Life Plan' in place categorically stating no hospitalisation for intravenous antibiotic, only for anything that would cause pain such as a broken limb. At the end of his life this made it easier for me as I knew not to call an ambulance to get him treated for chest or urine infections. The GP was excellent at supporting this and issued oral antibiotics along with drugs ready for a syringe driver if he seemed to be in pain, this was fitted the night before he died just in case he was feeling pain or agitation. His death was calm and peaceful and I would consider it a 'good death' surrounded by those who loved him. Thankfully I feel no guilt in the way I cared for him, I sometimes got a bit impatient, but that's only human. Ben welcomed death, we had discussed that well before he died, it may be what your dear Mum is feeling too.

Sending love and support

Kate xx

enjoysalud
enjoysalud in reply to Katiebow

Your share I found so comforting. Thank you. My son, too, had all his documents in place. He had studied law at a top university, passed the California Bar, practiced and hated it. He told me he LOVED the study, but not the practice of law. Even though he had all his documents in order, I still would take him to Urgent Care (he was able to walk and talk). I think he never resisted me because he knew it helped me. It did. When he suffered his 2nd bout of aspiration pneumonia, I took him in to see his primary physician and it was then we discovered that he again had aspiration pneumonia (but far worst than the first) and he was hospitalized. He could walk, talk (like you and me), watch TV. He went rapidly downhill when he was released.....five weeks later, after his release, he died. I think when he totally lost his vision, his mobility, and was in so much discomfort with constipation, etc, and KNEW it was only going to get WORST, that he chose to say goodbye to life, and asked for all feeding to stop.

Your share helps me.................funny, how the share of another can do that.

I remember once on NPR there was a short piece on the importance of going back, time and again, over events of a trauma, as it helped one's healing. Perhaps that is why so many of us who have lost a loved one to PSP remain and share.

honjen43
honjen43 in reply to enjoysalud

Thank you for your last paragraph! That is a satisfactory explanation for me as to why I am still here! I am not nuts! Just moving along with the healing!

Hug

Jen xxx

...and it's not just you, Jen ;-)

Anne

I hope my comments are helpful to those who's loved ones are nearing the end of life, and yes it is cathartic to relive the event too. As time passes I feel that others don't really want to share this part of my grief now but I desperately need to so it works both ways I hope.

Kate xxx

Robbo1
Robbo1 in reply to Katiebow

Katiebow. I haven't been on this site for months. I'm still coming to terms with being a widow, being free to do what I want, when I want and not caring for any of it. What a terrible time we had, but now we have to cope with the aftermath and the grief that is the price we pay for love. Sending my best wishes and a big hug. Rx!

Katiebow
Katiebow in reply to Robbo1

It feels a very empty world doesn't it. People are really kind but they just don't understand that feeling of loss. I have been out and about visiting friends and relatives who I haven't been able to visit these past few years but I long for Ben to be with me, doing the things we should have been doing together.

Love and hugs back

Kate xxx

Robbo1
Robbo1 in reply to Katiebow

I know what you mean, Kate. We were in our 50 th year of marriage when B. died. I try not to be resentful of people who are much older than us and yet can still do things together, while we cannot. To keep me sane I think of all those years that we had, most of them very good years, and how lucky we were to have them together. It doesn’t stop me from crying , or from feeling sad, but when I think of some couples who did not have that happiness for various reasons, I realise that I need to count my blessings. It helps a little I think.Rx

Katiebow
Katiebow in reply to Robbo1

Sounds a good policy to adopt Rx.

K xx

My brother in laws funeral was on Friday. He had PSP diagnosed about 7 years ago at 67. My sister found the strength to care for him all these years, eventually with a team of good carers. The burden of this disease falls on those afflicted and those caring, in equal measure. Do keep yourself as well as possible as your Dad will need you after your mum has died. Get help for yourself if you can. You count as well. Xx

Dear Karen. Here are my thoughts....

My story was so different, caring for my beloved husband for many years and he died surrounded by our children and myself, talking to him, singing his favourite songs and letting him know how loved he was.

However, in some cases, PSP progresses rapidly. You are lucky to have CHC and a good neurologist. Try to use your time being a loving daughter rather than a carer and encourage your father to be the loving husband to your mother. Time is precious and you at least have the good fortune to be able to tell and show your mother how much she is loved. She will go when she is ready. Make the most of the time you have left together to support and love one another. When the end does come, let her feel surrounded by love. You, as well as she will benefit from this.

My very best wishes to you all. Rx

Much love and best wishes to you and your family. My mom passed in December. She had only been diagnosed a year and a half prior. She went on a big decline, plateaued for a year and then another big decline. Prior to that she had been suffering from symptoms for a number of years but wasn’t diagnosed. For the last 8 months she couldn’t speak at all but she was clearly depressed and cried a lot. It is so painful to see your loved one suffer and not be able to help. She died from pneumonia. I don’t know whether she wanted to live still or she found it a relief - and it is really painful to dwell on those questions that can never be known. In the end, the progress of this disease is out of anyone’s hands. It sounds like your mom is being well and lovingly cared for. Two thoughts from my own experience: (1) some of my most meaningful moments of connection towards the end were when I dropped the bright facade and cried with her and (2) don’t miss the chance you have now to tell her all the things you want her to know - especially how much you love her.

It is a year since my husband died. As other have said the death need not be frightening. We had talked at length and agreed that the quality of life was the deciding factor. When he reached a place where that was insufficient he stopped eating and drinking. He died very peacefully. I found it hard to let him go but it was the right thing to do. Not everyone wants this but if you are able to talk about it you will be clearer about her wishes.

My husband knew we all loved him and he was comforted by feeling we would support each other.

It's such a hard time. My heart goes out to you.

Love Jean xx

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