The Long Goodbye

by Ingrid Ward
(Santa Maria, CA, USA)

Hello, my name is Ingrid. My "companion" of 30 years, Larry is slowly dying from a disease called Huntington's. It was passed down to him by his mother. It is slowly destroying his brain, and he is in the early stage #2. His short term memory is gone, and cognitive skills are slowly disappearing. Larry is the sweetest, most gentle soul you would ever want in your life. We have shared many great times, and even some challenging times in our 30 years together. We recently relocated to Santa Maria, CA, after living in Burbank, CA for 22 yrs.

Our lives have changed dramatically now that we are up here in SM. Larry is a VET and he was finally given his final diagnosis recently. However we have been dealing with this for some years. He has declined seriously since we moved up here in Nov. 2011.

The grief I feel right now is so tremendous. Its ripping my heart apart to watch him daily, struggle with this illness, and what its doing to us as a couple. I see the same body, but the person inside is a stranger now. I am his full time caregiver, and its becoming increasingly hard to manage his care. Not only that, but I am watching the love of my life disappear in increments. Its brutal, and gut-wrenching, I have so much grief and despair, and I can't share it with him. He doesn't remember our conversations, and has lost the ability to be a "mate" to me. So I am grieving the loss of my best friend, soulmate, etc. But its a slow death, and sometimes that seems harder than if its quick. Yes I have time to say goodbye, but the wound is so raw, and deep. Its like somebody everyday rubbing that wound with sandpaper. I still love him so very much, but the Larry I had is no longer there. Its hard for people to understand, and the process is agonizingly slow. Not that I want him gone, but I fight to accept him as he is now, I find myself wanting "my" Larry back. I can't have him, and that reality is ripping me to shreds.

Grief can come in many forms, and stages, yes. But the 7 stages of grief are still as real, even if they are here or not. I don't know if anyone out there can understand that, but the emotional tornado I am going thru right now is brutal, heartcrushing, and exhausting. If anyone can have an idea of what this is like, I would love to hear from you.

Thank you so much for this website, I am sure it helps others, and we are all here to help each other I think.

Sincerly,
Ingrid

Comments for The Long Goodbye

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Jun 05, 2012
You are not Alone
by: by: Doreen England U.K.

Ingrid I am sorry you are in a hard place right now and have been for some time.
My husband Steve had MESOTHELIOMA (Asbestos related lung cancer) which was inoperable and incurable and aggressive. Yet Steve fought for 3yrs.39days till he died on 5th May 2012 till I buried him 11 days ago. 25th May.
Steve had a slow painfull death and I wondered sometimes if a quick death would have been better as I knew 3 women all whose husbands died of the same disease and Steve lasted the longest. I still don't know the answer. Steve had no quality of life and this made it difficult and he actually wanted to die sooner as his suffering was too much for him. I had 3 years to grieve each stage of loss as it came. Steve would not sleep during the night and he would during the day and I had to massage his back, legs and feet every 20 minutes to give him some relief from pain.
Steve would sleep a lot and I felt lonely and imagined this is what life is going to be like from now on. But the lonliness now is worse now he has gone. When he was sleeping at least he was here alive.
Towards the end his care needs changed and were full on and I struggled but coped and would have needed to get carers in for support, but sadly Steve did not survive long. I was unprepared for Steve dying and waited for a miracle that did not come and it felt as if it was a sudden death for me despite the long slow illness that was in reality a slow death. It is a hard place to be because when the care needs get more and the response from your loved one is as if they don't know what is happening it is a prolonged agony for you. Steve had so many aids sent in from Social Services but I could not get a hoist to make it easier to lift him and this was difficult. But I would have carried on despite this as I was motivated to care to the end. Everyone has different needs. You do what is best for you. I said to God. If you can't Heal Steve then be merciful and take him now as he can't take anymore suffering. Times Steve's pain was so bad and he wasn't given an injection and I was screaming down the phone for a doctor to come and give him an injection for pain and they had to finish their clinics before they came out sometimes waiting 3 hours. The stress often was too much to bear. I know you are in a hard place to be right now and their is little we can offer you in real support other than to have someone come in and help you physically by giving you a break and share the care.
My Prayers are with you and my support.

May 30, 2012
I understand my mother had Huntingtons
by: kathy

I totally understand what you are going through. My mother had Huntingtons and I was her care taker for the last 10 years of her life. It was hard watching a,vibrant slowly taken away from you. Towards the end she wasn't able to do anything for herself. Remember to take time for yourself and try to get some help. There are support groups maybe it would also help. Keep writing your feelings here it also helps. We both know there is no cure for this terrible disease maybe some day there will be...

May 30, 2012
We Are Never Ready.......
by: TrishJ

God bless you Ingrid. My husband was so ill for the last three years of his life. We waited patiently for a heart transplant but it didn't happen. My heart goes out to you. I know how it feels.
I really don't know which is worse....the lingering death, the not having them long before their heart stops beating, or the sudden tragic death. Either way we are never prepared.
PJ

May 30, 2012
Sharing the Pain of Life
by: Robert Dean

Ingrid,
Yes it is brutal, heart-wrenching, and like rubbing an open wound with sandpaper. My recent loss of my K9 Wolf-Malamute is all that I have to relate to the loss you are experiencing. Some say that he is “just a dog”, but those who have never had the opportunity to have that love whether it’s with an animal or with a person will never know. My story is called “The Pain of Life” and that is what we are both experiencing. My buddy Akila has been released from that pain, and it sounds like Larry may not be mentally cognizant of the pain he may be in. That leaves you to deal with his pain, and the pain of watching him degrade. I fortunately had the option of euthanizing my partner which may be a good option, but one that is not socially acceptable for you. Whenever the final moments come, the grief of Larry’s passing will set in and you will have much to contend. You may think you could have done more, or could have been nicer, or whatever degree of guilt you may drum up to drag yourself through. Losing someone who has been a close companion for many years is something that is unable to be replaced. As I am experiencing, it is just time that is supposed to help ease the pain. My loss occurred just over three weeks ago, and I still cry, or am on the verge of crying every day. My companion was next to my side everywhere I went, and I was with him throughout his decline from the degenerative myelopathy which caused him to lose the ability to function as the proud wolf that he was. The pain of life is all there is left for me to contend as I try to find the strength to go on each moment of each day. I have no one else in my life as a partner, and I am alone on my journey forward. I have a very supportive family, and some good friends that can relate to the loss that I am grieving, but that comfort that they provide only goes so far to fill that gaping emotional wound that has been left by the passing of my only true companion. I also had a human companion that has been emotionally inadequate during this whole process, and that person reminds me of the Larry you talk about. Your pain is shared, and I hope that is of some comfort to you as you basically move forward on this journey through the pain of life. The following link is to my story on this site; please leave me a comment if you like. Find the strength you need to make your journey, and best wishes for both Larry and yourself.
http://www.recover-from-grief.com/the-pain-of-life.html
Robert Dean Karp

May 30, 2012
I Truly Understand
by: Judith in California

Ingrid, I have walked in your shoes. My husband fell and fractured his skull 5 1/2 yerars ago due to Parkinson's Disease. He was okay ofr a whie rthen every 3 months I noticed he could no longer do the things he used to. He lost his ability to feed himself, dress himself and toilet himself and at the end he lost his voice. I, too, became his total caregiver and it broke my heart each day. I became his walker, his hands, his feet. I bathed him, and took care of his every need he could no longer do for himself. It killed me to have to put him in diapers. His dignity and self image was waht I wanted to preserve for him. I still told him he was my handsome nman after I got him all cleaned up and dressed for the day.
I cried for the loss of our lives as we once shared it. He was so handsome and strong and loved me more than I knew.

Yes, the grief begins way before they pass. We grieve each loss of their abilities as it happens then the final loss of their body is just as hard. And I, like you, prayed for him to pass when he could no onger communicate to me about how he was feeling. For how could I care for him when he couldn't express to me pain, or discomfort or if he had to go potty or anything. I told my therapist It's not that I wanted him dead but that I wanted the disease to die. God heard my prayer and took him 3 days later. My heart was broken tremendously. I still cry, but less , as it's been 21 months for me. I have finally come to the peaceful side of grief. I accepted the fact no matter how much I cried and begged He would not, could not come back and that he is at peace.

I pray you will get the relief you need soon. It's a long road to acceptance and peace. Take care Ingrid and keep God in your life . He will give you the strength you need.

We will be here for you when you need. Take care of you in the process. I hope you have someone, a friend, who can give you a few hours to yourself once in a while.

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