Saying goodbye...

Karsten - I do remember how hard it was for you when your dad passed last year. I'm glad to hear that you're doing much better. Very glad.

She, based on your last comment, very similar to my dad. He was only diagnosed in 2016 and progressed very rapidly and died last year. Ironically, I felt a bit ripped off as I heard stories where such patients lasted many years. I know I would not want that for my dad, but at the time I felt upset. He lived 90 years before he was even diagnosed and had a two year bout after that, so if he had to go it was probably relatively easy but that does not make it easy as you are experiencing.

And I don't think it will ever be easy for you, especially the spouse who lived with him all those years. But my dad passed last April and after pushing a year now, it has become somewhat more tolerable and I am able to smile and laugh when thinking about him again. And I do think over time, it will in some way become more bearable for you.

I love the idea of a memory library.  It feels as if you wrote it for me. Thank you for sharing. I lost my husband of 42 years, my best friend, in October, 2018, after a nine year struggle with Parkinson's. ln the end, I had Hospice, but, I provided all of his care in our home and it was exhausting. My grief journey started before he died, because the life we had before PD was gone.  At night, I would read this blog and always found something written that helped me to carry on.  I look forward to more of your writings and wish you continued strength and God's blessings on your journey.

It is almost 3 am and as I sit in my chair, the tv on, my tears are those of such gratitude for the many kind words you all have posted. My journey was not as long as the one most of you are going through. My husband was not diagnosed until 2016, though I knew something was terribly wrong. It was so hard to get his primary care doctor to refer us to a neurologist and then to get tests done. Even then, with CT scans, the results did not show anything more than mild degeneration. But his journey, once we got a diagnosis, was shorter than most. Still it was such a long goodbye, with so many huge changes in his cognitive and physical being. The tipping point was when his swallowing started to become difficult and he deveoped pneumonia on three occasions. We then transitioned to thickened liquids and pureed foods. At that time his day and nighttime bowel and urinary controls were gone completely. He became very violent and his sundowning worsened quickly. My memories of those months haunt me still and resulted in multiple trips to the ER. His primary care doctor advised me to refuse to take him home. At that point we found a nearby skilled nursing facility-it was only four miles from our apartment, it was easy for me to travel back and forth. They also allowed me to bring John's sweet pup to visit. I also took "Sam" to visit other patients. It was during this 20 day period that our Sam was diagnosed with congestive heart failure. I did not tell John because he would not have fully understood. Sam did well on medications, for awhile, but passed away 2-1/2 months after John's passing. It was on that morning that my heart broke open completely. The pain of losing the comfort of Sam was just too much. I know that I will heal and I hope that your experiences, as you do the best you can to care for and to provide care, to your loved ones, will, when your journeys are over, leave you with insights to help others.

Thank you for listing the two books.

My heart goes out to you, She. Will be praying for you. (HUG)


My Memory Library

Imagine if I was given one moment,
just a single slice of my past.
I could hold it close forever,
and that moment would always last.

I'd put the moment in a safe,
within my heart's abode.
I could open it when I wanted,
and only I would know the code.

I could choose a time of laughing,
a time of happiness and fun.
I could choose a time that tried me
through everything I've done.

I sat and thought about what moment
would always make me smile.
One that would always push me
to walk that extra mile.

If I'm feeling sad and low,
if I'm struggling with what to do,
I can go and open my little safe
and watch my moment through.

There are moments I can think of
that would lift my spirits every time.
The moments when you picked me up,
when the road was hard to climb.

For me to only pick one moment
to cherish, save and keep
is proving really difficult,
as I've gathered up a heap!

I've dug deep inside my heart,
found the safe and looked inside
There was room for lots of moments;
in fact, hundreds if I tried.

I'm building my own little library,
embedded in my heart,
for all the moments spent with you
before you had to part.

I can open it up whenever I like,
pick a moment and watch it through,
My little library acts as a promise
I'll never ever forget you.

Sarah Blackstone

She1934 - What you wrote was very touching and full of love for your dear husband. It brought tears to my eyes. I agree, the memories of the good times are priceless treasures. I am sure you have many of them with your husband.

I, too, am lucky to have a handsome, blue-eyed, funny and talented husband whom I love dearly. He makes jokes all the time, a lot of them at my expense, but they are really funny and I love them. Years ago, I kept a log of all his funny jokes so I could remember and read them later. Unfortunately, the log was in my computer that I no longer have. I really should start writing them down, in my journals, along with other memorable things that my my kids say and do. Soon, they will grow up and be out of the house. Memories are all we will have left after our loved ones are gone.

Take care of yourself and the precious memories of your husband.

She1934: Firstly, I am so sorry for your loss. Secondly, I found your post simply beautiful! When I got home from out-of-state caregiving for my late mother, I sought out the help of a psychiatrist to relieve my sadness.

She, I am so sorry for the loss of your husband. I remember very well some of your posts. I pray that you will continue to heal and day by day recover from the ordeal that you have gone through. You sound like you are well on the way.

I am truly sorry for your loss. It seems you were blessed to have such a wonderful person in your life. May you find peace.

You are still raw in the grieving process. My SIL died a year ago today and I still think about her daily often in the middle of the night. I lived with her for six months after hospice came on board. Relish the memories, cry as you want, be kind to yourself but most of all remember he is at peace.

She1934, I am So sorry for your loss. While I have been through so many deep losses, those of our 4 parents and so many Aunties and Uncles, the loss of a spouse seems even that much more difficult, and for that I am truly sorry.

Having gone through losing my own Mom and Dad some 14 &15 years now, I can only say that cliche saying that time does heal, though it is still very early days yet for you, but do try to take those quiet times throughout the day to chat with him in your mind and to remember all of the many wonderful times you 2 had together, I am sure you miss him so very much. Soon, you will replace all of the more difficult memories of him with the Most Wonderful Ones, or at least that has been my own experience.

I too have a wonderful husband, who is my whole world and I cannot fathom a time without him. We at 59 & 63 find ourselves chatting about just what it might be like in that eventual time, and the conversation tends to be a short one, as neither of us can get beyond thinking of a future without one another in it, and I know that we need to get past that, as it is not healthy, as one does need to prepare for the future.

It may seem an premature (at our age) proposition to some, but my husband and I have only just sold our home of 24 years, cashed out, put our entire household into storage, with the intent on downsizing into a Condo, but we are waiting for just the right one to come onto the market. After watching both our parents do simular type moves in their late 60's and early 70's, and the housing market being so strong in our area at this particular time, it felt the right thing to do.

I tell you that after 35 years together, 2 homes, raising 4 great kids (and now Grandkids), taking care of 4 ailing parents, and now to being Completely Free of Any debt or responsibilities, Wow is it ever the most Freeing Feeling! It almost makes me want to consider never purchasing a home again! My husband and I sit and dream up ways to blow (just kidding) through our equity on nothing but Fun, Fun, Fun, but we are realistic folks and know that we must reinvest our monies into a tangible investment to secure our future, so a Condo it is. Still we are going to enjoy this short-term freedom while we can, plus we a very close to our families and would never consider moving away, Drat, Lol!

Marriage to a long term spouse can be one of the most amazing relationships and friendships that one can ever have, and I hope that you were as blessed as I have been, so share you memories with friends and family, and then look to reinvent yourself into a future that is still vibrant and full of so many bright spots and wonderful possibilities. I know that you husband would wish for you to go on and to enjoy your life to the fullest!

She1934, you have been such an Amazing contributor here on the AC, and I hope that you plan on sticking around to share your wise and wonderful experiences! Your Wisdom is much needed here on the forum, plus we all want to see how you are holding up and getting on in your future, We Care about You, so Take Care Sweetie!

😪😪😪 Thank You 🙏🏾

She1934,

Your story of your life with your husband brought tears to my eyes. I am exhausted too. I get frustrated too being a full time caregiver to my 93 year old mom with Parkinson’s disease but I know without a doubt that it will hit me like a ton of bricks when she dies.

You are a lovely person, my dear. I can see that in your writing. You will get through this. There is no right or wrong way of how you feel.

It is so clear to me that you are alive and vibrant, even though what you have been through wore you down while going through it. Something tells me that you have a quiet inner strength that will bring you full circle. I love that you haven’t lost sight of the man you fell in love with. Please keep reminding all of us how diseases change people and that is not who they once were or even who they are deep down inside. Your honesty is so refreshing. I am sorry for your loss. I am inspired by your experience. Please continue to share on this site. We need all the wisdom we can get. Thanks for being genuine.

I lost my husband Aug of last year- 3 months before he would have retired. MY remaining family is a brother who lives several states away from me.
I recommend Griefshare.org. I am attending one of their groups at a church near me.

To Annegirl: we aren't allowed to give out personal information but I am so sorry that you mom is grieving so. If you are on Facebook I would be glad to "friend You and try to communicate to your mom that way. But please do try to find the books I mentioned. They are not expensive. She could definitely benefit from either group bereavement or one on one counseling through perhaps the funeral home-did he have a service? If he was in Hospice they are the most compassionate folks. You must stay in close touch and never be afraid to talk about this loss-no matter how long it has been. There wiil be unexpected moments when her heart will break all over again. I tend to "cocoon"atop not want to go out at all, to nap but not really rest. There are no rules-there is deep sadness, fear, regret, guilt, anger. Try to get in contact with a friend who might encourage her to write down happy memories and she wiil, hopefully, begin to close the door on unhappy ones. The goal is to build a whole new spiritual relationship with her husband. Though I am not a deeply religious person, I am in search of spiritual peace. I send you both hugs and commend you for caring.

What a wonderful person you must be to reach ou to all of us and remind us to be kind to ourselves in the midst of your own grief. I am so sorry for all of your losses, but also heartened to know that you are practicing what you preach. To set up such well-rounded support network is a gift not only to yourself, but also to all who love you.

Hello. I am new here and do not really know how to do this, so please bear with me! But I am reaching out to you for my mother. She had a situation similar to yours. Lost her husband (my dad) after almost 55 years of marriage. Taking care of him in his last few years almost killed her. Now, she is in much better shape physically, she is fine cognitively. But she is grieving his loss, the loss of the fine man she married. She often says that she has no one to talk to, no one left alive who can understand her loss. Is there any way I could get you in touch with her, if you would be willing?
I am not sure what to do to have personal, private contact. Can anyone guide me?

Beautiful words ((((((hugs))))))

It is hard, indeed. You are on the right path. For me, volunteering at a nursing home has helped. If you decide to do something like that, I recommend not doing it until after around a year. Your health has taken a hit, so concentrate on getting your health back. Don’t volunteer a lot at first. Also, if there is a way to spend time around some children, that can help too. Pet a dog when you can. Go to the movies. Get out into the fresh air. Nature heals. Slowly get back to life. You can do it. We all can.

She1934..... your journey of healing begins now.... what a beautiful and so meaningful message you have posted and we all feel honoured in reading the words and felt your tears.... I shed some with you whilst reading it.

isnt this blog just the most humbling and humane invention ever?

when I was caring for my grumpy old pa in 2015, the daddy that I know always loved me ... but now he had to demonstrate that he loved his girlfriend more.... and I had to watch and could do not a jot whilst he lavished gifts, a flat, half a race horse for her daughter etc etc

but it’s coming up to 2 years since his bowel cancer finally took him and I’m experiencing that amazing ‘2 years’ acceptance thing.

you will be nearly whole again in the not to distant future, we all promise xx

I appreciate your post. My Husband just passed away on February 14, 2019. After a long 4 year's of hospital stays and nursing homes. I also miss the year's we had before he became sick. His sense of humor and always happy. Married for 50 years and we had a great life. My Husband gave me a great gift before he passed. He was on hospice and sleeping all the time. One morning he opened his eye's and said my name I was sitting in the room. I jumped up and went to the side of the bed. He told me he had to say goodbye and that he loves me. He also told our son and daughter he loved them. That was the last words he spoke and passed away two weeks later. I will always treasure his last words to me.

I lost the love of my life on May 12, 2018. There were no groups to help me in my grief, but I found support online.

I am sorry that you too had 6 months of agony before your loved one passed and I am sorry for your loss. I'm glad you were able to bring him home to be surrounded by loved ones at the time of his passing.

My husband passed away in April of 2017 and I still miss him terribly.
I cried when I read your post as it was almost identical to yours. May God Bless you. I know exactly what you are going through. If it weten’t For my grandchildren whom I see every day I don’t know what I would have done but in another year they will be going off to college and Iwonder what I will do then. I pray toGod for the strength to go on.
Hugs!

This is a long emotional and spiritually-wrenching path. I have walked on this path and indeed I am still on it. My husband had FTD as well and the AWFUL changes it brought about in our lives was truly head-spinning. We went from having a wonderful life to an awful existence, and in a relatively short time. While you're in it, you can only do life one day at a time. I was forced to place my husband into a memory care facility for the sake of safety for all of us. Unless someone has witnessed the extreme and unexpected behaviors that come as a result of FTD, people just don't get it. On occasion my husband would 'come to' and fleetingly, for short periods, be the kind, loving person I married 32 years ago. But then quickly he'd be gone (mentally speaking). This journey was by far the most difficult thing I've ever had to do in my life. It's still a struggle and is mind blowing when I think about 'then to now'. I have no guilt as I know I did the right things. I spent hours with him every day in memory care. People had started telling me to only show up once a week and to 'get on with my life'. To adopt their mindset would have been, in my opinion, to have abandoned my life partner and my very best friend in the world, the love of my life. I was glad I spent these months with him - he was only in the facility four months and passed in October 2017.
Last winter, when I needed it most, I was unable to find a suitable grief support group but did stumble upon the book "Healing After Loss" by Martha W. Hickman. The whole book resonated with me and I've read it now about 5 times. When I did find a suitable grief support group (via GriefShare.org), I brought the book in and the group leader was so impressed, he ordered copies for all of the participants.
A word here to those of you putting off traveling or taking your dream trips until you retire, etc. Don't do it. My husband and I traveled extensively over the years until about 5 years ago. I am so glad to have been the places we went together and have those memories (and tons of photos as well) to look back on now. We never know how long we have here on this earth. I sorely miss the life I had but I can't live in the past and can only move forward. The grief journey is not one anyone chooses but comes to all of us eventually. It's the hardest thing you'll ever do in your life.

Hugs, I am so sorry for your loss. I am believing with you that you will remember the man you shared your life with and the memories of the man he became will just be a short season on your journey.

My husband passed two weeks ago. I'm crying as I read your story. I don't know how to go on, if not for my two cats and dogs, I know I would be in deep despair. I need a hospice grief group.

She1934- write down your memories, you have a gift for words! All those beautiful memories, great and small... if not for your children and grandchildren, then let them pour from your pen as a way to remember his life.

I've found that grieving isn't just about losing someONE, it's about grieving over What Might Have Been- memories that will never be made, and sometimes I think that's the hardest thing of all. But think of the treasury of what you do have and never forget them. I wish you comfort and peace.

She1934 - Your post brought tears to my eyes.  I could've written it about my dad.  Almost identical stories and he just got accepted by Medicaid one week before he passed away in September.  For the few days we used Hospice they were wonderful.  I wish he had been able to have gotten their care sooner but the NH staff took good care of him too.  I miss him terribly.  I'll look into those books.  Hugs to you.

I’m very sorry for your loss. I’m also very sure your husband knew how much he was loved. And what a kindness of you to post here, recommend good books, and encourage others in their walk. Blessings, the comfort of good memories, and peace to you as you move forward