Mourning for someone who is still alive...

[Hayleyald]

Although I don't often post, I read things all the time on this site. It is so helpful and reassuring (is that the right word?) to know that other people are experiencing the same things as myself and my family.

I am writing this knowing that other people will relate but I just wanted to say it or write it so it's out there..... I feel like I am in an almost constant state of mourning despite my dad still being alive. Each time a new aspect of PSP creeps into our life, I feel it again as the person who I grew up watching deteriorates a little bit further and this new 'portal' of a person takes more shape.

I know that this is the reality of many degenerative diseases but it feels so cruel to me and I cannot imagine how it must feel to be that person trapped inside a body that is changing so significantly and those changes are outside of your control???

Grief is so hard at any point but such prolonged grief is heart breaking.

The only positive from this nasty disease is that over the last 2 years I have witnessed my dad's bond with my son (3 years) and my daughter (1 year) blossom. My children are so accepting of my dad in such a pure way that it has taught me so much. It is like they see beyond his illness or perhaps do not even see his illness as that is all they know. I watch the easy way they interact, I'm sure the mono syllabic level of communication helps!! If they don't understand what he is saying, my son has no qualms of repetitively asking without any sense of embarrassment or frustration- it is endearing to watch.

So in that sense I feel that despite me 'loosing' a dad, PSP has enable my children to gain a grandparent.

Thanks for reading x

[easterncedar]

Hi, Hayleyald. You express this situation so very well. It's an experience we all share.  Lovely to hear that your children can have this relationship with their grandfather. Deeply sweet. Thanks for writing.  Love and peace, Easterncedar 

[Hayleyald in reply to easterncedar]

Thank you Easterncedar

[Heady]

Hi, yes we all feel exactly the same.  Each day another neuron dies and our loved ones lose the ability to do something else.  It is extremely cruel and very heartbreaking.  My husband is long gone, from the man I married, but I am still left with his body to look after.

I have to say, many congratulations on the way you are bringing up your children. S's grandchildren are not allowed any where near him!

Lots of love

Heady

[Hayleyald in reply to Heady]

Oh Heady that is so sad that S can't see his grandchildren.

we have to always be aware of where everyone is in case of falls etc. as you can imagine (it's a bit like having 3 toddlers really). They are all demanding in certain ways (my children and my dad ha ha) but my children definitely appear to have a calming affect on him for the most part. x

[NannaB in reply to Heady]

That's so sad Heady.  Why? Our grandchildren have gained much from being close to C; compassion, the knowledge that disability and illness are nothing to be afraid of and the 9 year old now knows a lot about the brain. What a shame Ss grandchildren are missing out on so much....so is he.

X

[Heady in reply to NannaB]

I agree, but what can I do? S's  son is so frightened of catching PSP, he won't come near us, much less, give me or his father any support!

Lots of love

Heady

[NannaB in reply to Heady]

☹️ X 

[easterncedar in reply to Heady]

oh, Heady, that is so grim. How some folks live with themselves, I can't imagine.

[Craines in reply to Heady]

Oh Heady, I so feel for you with the family thing. My husband is now in a nursing home and I am the only one apart from my daughter and her family visit him. He has three children who never visit or enquirer as to how he is. Today I visited him and he seemed a bit more 'with it' at first but then he just switched off. I feel so guilty leaving him there. Thank goodness I have the cats to cuddle when I get back home. Love to all of you going through the same.

Chris x

[Satt2015 in reply to Heady]

Omg Heady

I swear we must be related!

My brother is the same with my dad and his boys! Bloody charming isn't it?

Makes me soooo angry I can't put it into words!! 

Huge hug X

[MaddyS in reply to Heady]

Does his son live in the year 2016. PSP is a plague but not THE plague. Sending you hugs xx

[Heady in reply to MaddyS]

Don't think he has the brain cells to work out the difference!!!

Lots of love

Heady

[abirke in reply to Heady]

Oh Heady I am so sorry.....The poor grandkids don't know what they are missing. It helps build character when children (anyone) has to deal with someone on a different level than is customary.....I lived with my dying grandpa...for ever...Emphysema ...big old oxygen tank him in bed most of the day and my grandma going about business as a committed wife looking after all who enter her home. I can't help but think that grandma helped me to understand my role as a carer long before I needed to play one in real life. I do hope you can have a sit down with your kids and talk to them!

AVB

[Heady in reply to abirke]

Not my kids, thank goodness! Be thoroughly ashamed of myself and them, if mine behaved like S's are!!!

Lots of love

Heady

[abirke in reply to Heady]

Indeed....but still his own kids....little brats....sorry....I suppose you talking to them is out, eh?

AVB

[Heady in reply to abirke]

Learning to put them out of mind, definelty out of sight!!!

Lots of love

Heady

[abirke in reply to Heady]

Don't need the pain.....I hear ya.

[LynnO]

I so know what you mean about mourning someone who is still alive. I cared for my grandma who had Alzheimer's.  My dad had had a brain aneurism  that caused sever brain damage. Both declined and changed so much from what they were. But in both cases, there were still little "silver linings" to enjoy.  My husband has changed, but I can still see the "old" him in there most of the time. These diseases are so cruel for the caregiver and the person with the disease, but sometimes we're blessed with something good to experience.  I hope you have more happy memories with your children and your dad.

LynnO

[NannaB]

Thanks for posting. I'm sure we can all relate to what you have said.

X

[Satt2015]

Hi Hayley

I totally get you

Heartbreaking 

It's killing me watching my dad decline so rapidly

Big hugs X 

[Squeak63]

My heart goes out to you , I can really relate to what you say. The sense of prolonged mourning for someone who is still with us, it's grief for a relationship that has been completely altered. I try v hard to look at the half full but at times I can, as the man my husband was has gone in part. so sad, he is still him but I am now carer rather than wife.

[Debbieann]

I know what you mean, F is no longer the person I married, unlike a lot of other people I feel like I don't even get a glimpse of the person he was the personality change is so drastic, that's without the physical inabilities. My marriage is over and all retirement  that we had worked hard for is not happening, so I'd say the grieving process starts early with PSP!! 

I think it's good that your children interact and accept. In the past a PSP sufferer would have been hidden in the attic , the family secret!!!

Xx

[Hayleyald in reply to Debbieann]

Hi Debbieann,

The grieving process definitely starts early with PSP. My dad was about to retire when he got diagnosed, so yes worked so hard to never enjoy his retirement!!

I am sorry to hear F has changed so dramatically personality wise, it is so hard to care for someone when they do not resemble the person you know and love.

Kind regards Hayley

[Cuttercat in reply to Debbieann]

Dear Debbieann,

Your reply speaks volumes for me.  I have to try harder to appreciate but I feel resentful when I see other couples having the time of their lives.  I know I will look forward to being alone and destitute when this is over.  Don't want to become bitter, but it sure it hard.

[Heady in reply to Cuttercat]

Hi,  it is hard, isn't It? seeing couples out doing things, knowing they are a lot older than us, but still able to go out, enjoying life.  What upsets me more though, is seeing people waste their valuable time together, (doing what we have all done,)  argue over stupid things that don't matter!

Lots of love

Heady

[Finoni]

The way you describe your children's relationship with their grandfather is just lovely. I feel I am living with a 4 year old rather than a husband much of the time, so maybe that is why they relate!

[Hayleyald in reply to Finoni]

Finoni that is exactly when I say to my mum. Listening to them it is like my son is communicating with his friends, is only visually you see the generation gap!! x

[MaddyS]

You are right mourning starts long before your loved one dies, only fully recognised this when hubby died. In a strange sort of way it helped my recovery process. Take care, maddy 

[Hayleyald in reply to MaddyS]

Sorry to hear your husband has passed away Maddy.... yes I can imagine that it is all preparation for when the day comes when an individual passes away.

[Valbri]

Thank you Haleyaid for sharing. I too am in mourning for the husband I had before PSP entered our lives. Our five children our very supportive and our grandchildren accept Papa as he is and are quite willing to give him hugs and play balloons with him. Papa no longer speaks and is now using a feeding tube . It is quite a learning experience for them. However it saddens me to know that since our grandchildren are very young they will only remember my husband as he is now . They never knew him as the man who loved to play and teach children. He would have been a great "hands-on" Grandpa. 

[abirke]

Greetings Hayleyald, your post made me cry and then laugh when I 'saw" your grandkids interacting with grandpa! My son and his wife and nephew (they are raising) are here every week and what a blessing. I am so glad you are able to experience their relationship. It brings my husband great joy when that little boy comes around and gives him a hug....even all the apathy in the world cannot withstand the love of a child!

AVB