Hello friends -- I appreciate those of you that have reached out to me; this touches my heart deeply. I have been off the grid for a while. Transparency -- My mom has progressed, and I am struggling with this very slow horrible decline. I haven't heard her voice in weeks, and now her whisper is disappearing. I knew this was going to happen, I knew what to expect --- but, nothing really prepares the heart.
I, am without doubt, experiencing anticipatory grief ... so there's that.
On a brighter note --- she smiles at me, and my heart explodes.
Thank you for your friendship, and support.
(Hugs to all)
Kim xx
Photo: Better days -- 6 years ago
Written by
bazooka111
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Kim,Your post brought a flood of memories back and my heart aches for you and your family. Anticipatory grief is a very real and very painful. I dont think many people understand it unless they have experienced it. Cherish every moment with your Mom now during this difficult time.
My wife also slowly lost her voice over the last few years, just as you described. It was one of those things she cherished doing, while I preferred listening to her. Another especially cruel aspect of this disease.
Your pictures always bring me such joy. It is amazing how 6 years with this disease make an enormous difference in aging. It was also the same with my wife.
Prayers of comfort, wisdom, and peace covering you.
Now I know what the wall is!!! Your photos always leave me with a warm felling of how much you love your Mom, and she surely loves you back!!! . This disease cannot take that away!! Rest when you can, and I hope you are getting some help so you can protect your health as this journey progresses. BIG HUG😇
Hi, Kim. I agree with all the comments. No one can understand your feelings, only us, the carers. We are following your steps. Imagine the future of our loved ones. Try to listen music together, this could help.Big hug for you both!
Oh Kim, I was literally thinking about you two this morning. I am sorry that life is getting harder. You know the various stages are coming, but it always seems too soon. I found the anticipatory grief so hard, watching your loved one slip away. Never knowing how much time you might have left. Consequently, we celebrated EVERYTHING. I was driven to make the most of our precious time. I told John how much I loved him all the time. I thanked him for being a great father, husband, lover and friend. Still after he passed, I wish I had told him even more. Try to stay in the moment. Easier said than done. Your mom knows how much you love her, it shows in so many ways. How blessed you are to have each other.Sending you strength and courage.
I live in Australia and my mother has been on the PSP journey for seven years( maybe more).
Anticipatory grief was something I had never heard of, but my father was diagnosed with it. It hit him hard when mum was diagnosed with PSP. He said that he missed their long talks.
Sadly his heart broke and we lost him two years ago. Mum is now in her late stages and we are experiencing the grief you talk about everyday.
I got teary reading your post, unfortunately as carers we all can relate to what we are all going thru.
I would give anything to hear my mum’s strong intelligent and caring voice again.
Beautiful photo Kim. Remember the wise words of Heady ..... look after yourself so that you can look after your mom. It is a difficult journey. Thinking of you both and sending a big hug and lots of love. Nanny857xx
My heart goes out to you. This is such a hard journey, both for the patient with PSP and their family. I too had anticipatory grief so know how you are feeling.
Just take it a day at a time. Your Mum is still there but not as you remember her.
Sending huge hugs to you both, keep on keeping on.
Dear Kim My heart really goes out to you and I totally understand what you are saying and agree with all the other comments on here. It is so so hard but try and be kind to yourself too, your mum knows what you are doing for her and loves you for it and you have definitely made her happy so keep on going, get rest for yourself too but most importantly keep making those memories and make the most of all those smiles and hugs. Thinking of you love Sarahxxx
Big hugs to you both with your lovely smiles. It was good to hear from you and see you both. This is the time when you need this family more than ever. God bless AliBee
What a glorious photo of a better day. May it bring you comfort on the heartbreaking days.
I'm so sorry you are experiencing the trauma of this disease & losing your precious Mum bit by bit.
I have posted before about what has massively helped my grief. I'd recommend The Grief Recovery Method Handbook by John James. I did a group course in 2019 and it impacted me so much I went on to train to be a specialist to teach the course.
It is an easy book to read the content and you can go through the exercises without a specialist.
Kim it’s so good to hear from you as you are often in my thoughts and prayers. Long may your mum’s smile last. We are all different but my anticipatory grief was worse than the grief I felt after my husband’s death. Of course after 44 years of very happy marriage, it was a horrendous loss but my overall feeling was of relief that he was no longer suffering. Of course he is missed but I’ve never felt the agonising feeling of total despair that I felt when I knew he would eventually leave me. As others have said, take care of yourself. May your mum smile often & your spirit lifted.❤️XxxX
I've been looking for your post every day wondering how you're doing. My husband passed away on Feb2, after battling psp for approx fifteen years. He actually died of Covid after fighting it for a month. He was in the advanced stages but was still able to walk,even though he fell a lot. I was always wondering if I would be able to care for him in the end. I was thankful it went slow, but was always wondering if I would always feel that way at the end. I didn't have to go through what you are going through. I'm sorry for all of you involved. Its tough to see them go through it.She knows what you are doing for her! Keep up the good work! It will be worth it all!! You have been blest to have a beautiful mother, but please go out and take a walk or do something for you!! Your mom would want you too!!
it is good to hear from you. I know how you feel and what you are going through. My wife is losing her speech right now too, and it is affecting me in ways I have not felt since her diagnosis 4 years ago. She always had the most lovely voice, and she walked through the day singing. Now she goes through the day humming. I don't know how she copes so well. She is better with this than I am. Hang in there and know that your mom knows what you do for her, is grateful for it, and most importantly, knows that she is loved.
Kim, Poor you - this is not a path we would ever choose to be on. Ruth's voice is going - so sad - such a big part of someone. You have every right to feel blue.
Dear Kim, I'm just checking the site after being away for some time. I was so glad to see your post but sorry your mom is declining. You have been so loving and good to her. Yes, anticipatory grief is real. Your mom knows how much she is loved and cared for. I know you've heard it many times, but please take care of yourself. Your health is important, for now and later. Sending love your way. Joy
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