Connect
The Last Phase of the Caregiver's Journey...
First of all, thank you to those of you who have offered advice, support, and information as I cared for my husband for five and a half years. He had two strokes, a hip replacement, was diagnosed with Parkinson's and Lewy Body Dementia. Our goal was to keep him comfortable and safe at home. He only wanted to be with me.
As his diseases progressed, I did hire a care assistant for the past 19 months so that I could go to town to get his medicine and groceries. Our care assistant was in our home for 18 hours/week; she was wonderful. She was always in good spirits and brought fun to our home, especially when I was too tired to be much fun.
My husband lost his battle on October 9. He had been placed on Hospice on September 27th and was given 6 months to live. Every hospice visit reduced his time with us by several months. It was a difficult roller coaster; he only lasted 12 days.
Now that his Celebration of A Great Life is complete, I still face the mountains of paperwork that must be completed. It is tough. I am untethered -- lost. I struggle to understand what all of the forms are even asking of me. I feel as if I am in a fog, it is hard to know where to turn for help. I feel totally unprepared for this phase of our journey, even though we had worked to put "everything" into place before we retired.
Though I tried to visualize living in our home alone (which is in a very rural area with no other homes in sight, and 50 miles from a town of any size), and I tried to visualize his last breath and being taken from our home -- I didn't even come close to imagining the emotional pain of his last days and breath, nor the quiet space I now reside in.
I am so grateful for the 30 years that we had together, though it wasn't long enough. I am grateful for the steadfast love that he gave me, and for the strength that he brought to our relationship. I am grateful that I was able to keep my promise to keep him at home as long as I was physically and mentally able. I am grateful that he always knew me.
This Thanksgiving, I shall be grateful for all that he brought to my life. He was an amazing, accomplished man and we always chose to love each other in all situations. I sometimes wondered what made him choose me.
Again, thank you to Mayo and to the mentors here, as well as others walking journeys like ours, for all of the support over these last few years.
Like
Helpful
HugInterested in more discussions like this? Go to the Caregivers: Dementia Support Group.
Connect
@hbjuniperflat. This is an amazing and heartfelt letter you have written. Your love of your husband shows through in every word. You must have been very special for him and he to you. Wishing you peace and love.
-
Like -
Helpful -
Hug
12 ReactionsYes, we had a very special love, and I am learning that many people described our relationship as inspirational. We never knew that people were looking and talking about us -- we just absolutely loved and respected each other. And though I know I will love him forever, I wish we could fall in love again!
-
Like -
Helpful -
Hug
12 Reactions"I sometimes wondered what made him choose me."
I don't.
It's obvious.
Any man would be very lucky indeed to have such a loving, caring, and devoted wife.
After my uncle passed two years ago, his wife -- a woman very much like yourself -- was faced with a similar situation. They were together nearly fifty years.
She takes life a day at a time. That's all we can do anyway. She tells me that my stroke recovery journey inspires her, especially my outlook that I celebrate how far I've come, not how far I have to go.
May God grant you peace, serenity, and continued strength.
-
Like -
Helpful -
Hug
16 ReactionsWhat a heartfelt tribute and expression of your feelings now. May he rest in peace and join you forever in your heart as you enter this new phase of your journey. I hope you have friends and family to support you.
Sending a virtual hug.
-
Like -
Helpful -
Hug
10 ReactionsI had tears in my eyes reading your post and what a tribute it is to your husband and to you. Your devotion and love brought you through the terrible times, the sadness, the feelings of helplessness as you traveled through the journey with only one sad ending.
I know that you will always be comforted by the memories of your time with your husband and that you will treasure them always.
I wish you peace, especially as the holidays are approaching.
-
Like -
Helpful -
Hug
10 ReactionsThank you, @providence1960. For the record, I had tears in my eyes, too, as I wrote it.
I know it has been only a short time since his passing, but I long for the day when we shall meet again in Heaven, and I long for the days when I won't frequently recall the moments when I was less than patient with him. He deserved only the best. I know that I was beyond exhausted, with only one night away in over five years; however, I don't want to justify those moments where I wasn't as kind as I should have been, for that would be making an excuse. We didn't "do excuses."
I do have many wonderful memories that I cherish. I am truly grateful for his love. He would tell me "I infinitely love you in all situations," and he did just that. He signed everything to me, "IFFLU." I am praying that he forgave me for any shortcomings that I might have exhibited during our tough journey; I believe that he did just that on one of our final mornings together, when he could no longer speak, but surprised me with the most wonderful hug. He hadn't been moving his limbs for several days; it was the best hug I had received in two years. His parting gift to me.
-
Like -
Helpful -
Hug
17 ReactionsNow I am crying. Thank you for sharing this beautiful love story with me.
I also regret the times I have been impatient with my Mom…I remind myself it’s the nature of the beast that has taken over her life. I try to think of how scared and frustrated she must feel and think as she can’t remember who she is or where she is or who I am. I know I am doing my best and I will continue to do that for my mom until she is in heaven with my dad…both waiting for me.
Peace be to you knowing you did your best.
Hugs!
-
Like -
Helpful -
Hug
16 ReactionsSincerest condolences on the death of your partner. Be assured, you will
eventually recover even if your grieving continues. You obviously had a wonderful relationship with your husband.
Many blessings. You are not alone.
-
Like -
Helpful -
Hug
8 Reactions@providence1960... and others with the same ailment -- "tears in the eyes" -- that hit me while reading Providence's post: Hang in there folks... we'll get through this.
/LarryG
-
Like -
Helpful -
Hug
5 ReactionsMy parents died 6 years ago, my mother had Alzheimers, my dad developed cancer. They lived 45 minutes from town, in a small village, and the aftermath was a lot of work! Please find someone whom you trust, to help you with the paperwork. I believe your husband probably had a financial advisor or tax preparer of some kind, contact them and ask for help also. My brother and I went through all of this, including cleaning and putting up their home for sale. We dealt with a trust and beneficiaries under California law. One of my siblings lives overseas so we also mailed documents back and forth for signature. Thankfully one brother was a real estate appraiser and was more familiar with the contracts and language. It took about 18 months to process it all. Trust your instincts and don't get rushed into anything. But get qualified and fiduciary help (those who work for your financial interest, not theirs).
-
Like -
Helpful -
Hug
5 Reactions