Like many people I wrote a list a few days before the New Year and I had every intention of following the list to the letter. Well, it came to New Year’s Eve and I was as happy as anyone, I was with my family and friends as the clock struck midnight but then all of a sudden it hit me....it’s been threatening for months, years perhaps but there it was at midnight on New year’s Eve. In slow motion I watched as everyone cheered, hugged and kissed their loved ones "Happy New Year!” I stood there frozen to the spot, tears running down my face. Years gone by we have always said "it can’t be worse than last year!" but this year the only thing I could think was its going to be worse, a hell of a lot worse.
Dad has deteriorated drastically over the past year or so and is now down to about 9 stone....I am over a stone and a half heavier than my dad (heavy bones!). He can hardly open his mouth to eat so we have to feed him mushed up food, he now has a catheter which we have to empty every hour, he can’t speak although that has been the case for years. If you looked inside his body you would see that everything is working fine, he has a healthy heart, lungs are fine as are all other internal organs but it is just a matter of time before his brain starts shutting them down. So this year we have to deal with more of this. I so wanted to go into this year with a positive attitude but to be honest, its wearing a bit thin now and I’m tired. I know that Mum and my Sister probably feel the same as we all carry this around with us every single day, there is no let up, no respite. You have to be realistic, I’m losing hope and I’m sure there is some quote somewhere that says "As long as there is hope etc." but what happens when that hope is gone? What is left after hope? This year it is very likely that we will have to deal with the death of an amazing man, knowing that is very very hard, dealing with it is a huge challenge.
The past week has been really tough; I feel like I can’t look to the future and see happy things, I can’t find the positive thoughts that have seen me through up until now. It is also likely that I will be pregnant at some point this year and having lost 2 babies already even that doesn’t get me through. Our lives are not normal lives, everything we do revolves around a dying man - some part of the grieving process we have been through already but there’s so much more to come. I suppose what has hit me while I have been writing this is that we are strong, we are strong together - me, Mum, my Sister and my Husband. Our lives will not start again until Dad has gone and let me tell you the guilt of thinking that makes me feel so so sad and like I’m a horrible person. I’m just being honest and I think I know you all understand. Amy x
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Amy, I am in tears as I read your post. I know exactly what you mean, and I feel the same way, and feel terrible guilt for feeling that way.
I get very angry with the situation that we are in, and often take out my anger and frustration in the wrong way, by shouting at those closest to me.
I do try to gain some perspective when I am away from my parents and think to myself that if it wasn't for my dad's illness, I probably wouldn't have been on so many holidays and day trips with them - we certainly have created a lot of memories together over the last few years.
Does your dad have a PEG? My dad had one put in a few months ago, and has put on a lot of weight that he lost while in hospital for 4 weeks. He still has 3 meals a day (mushed up food too), as he loves his food!
Slightly different to you, but similar, I have not entertained the thought of having children, as when we are with dad, he needs 25-hour care! I feel that the child would get no attention at all, so I understand what you mean about when you say about 'life starting again after...'.
Take care, be strong, and sending lots of love, Marisa.
Amy, you have voiced so well how you are feeling about your dad. My daughter and myself feel very much like you about the future with my husband as psp takes more and more of him away from us.
I do hope you all receive some respite. My husband has commented and it's a truism, he is the only of us who can't have a break from psp.
I wish you and your family the best you can get from this year and hope you all receive the support you deserve.
Amy, you have put into words so well how we feel when caring for a loved one with PSP. I, too, am afraid to look too far into the future as I know the future with my husband is slowly disappearing. Having said that, this cruel illness seems to be accelerating far too quickly. Twleve months ago, I knew my husband. Today, he is only part of the man I once knew and he now seems to, change almost weekly. I know that somewhere deep inside he is still the lovely man I married, but I find it hard to believe sometimes as he has changed so much.
Like all of us in a caring role, we must not look too far ahead, but we are all human and can be forgiven for sometimes for wondering what life would be like if things were different.
My love to you and your family and I hope you all find the strength and compassion to continue caring for your dad. He is a lucky man to have you as his daughter as you obviously care about him very much.
I just want to put my arms around you all and give you a great BIG HUG!!! There are 2 very similar posts on here today (Yours and Maeve's) both finding it difficult to face the year ahead and dreading what is to come.
If there is one thing I have discovered in the 3 years since Mum's diagnosis it's this:
ONE DAY AT A TIME! It doesn't help to look too far ahead - As Shakespeare so rightly says "That way madness lies!"
Treasure the time you can spend with your Dad and try to look after yourself.
We all understand how you feel and we're here for you any time you come to the forum. Do use it to "let off steam" if you need to.
Love and hugs to you, your Dad and the rest of your family
thinking of you, Amy. Losing my Dad slowly every hour of every day to PSP is the saddest thing ever and I too am running out of positive things to say.... Have you tried speaking to a counsellor through your GP? I've just started going to one, and it's a little buzz in an otherwise bloody hard struggle of a day - it's always good to let it all out. Best wishes to you all (so rubbish that phrase 'best wishes' isn't it?! if only people could feel more of what we are facing...) fran x
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