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When it's over...
My husband died last month.
We all know the stress and sadness of dealing with the slow death of dementia, but I’m just now finding out that when it’s over, there is an emptiness I didn’t expect. Yes, there’s relief from the daily stress of dealing with someone in the later stages of dementia. For the last couple of years I’ve depended on medication to help relieve the stress, to release the tightness that was often in my chest, and suddenly I don’t need that anymore. No more tightness in the chest, no anxiety—just relief and grief coexisting.
But what’s really taken me by surprise is the emptiness in what was our home and my life. For the last few years, my life has revolved around him and the dementia. Because it was time, I made the decision for us to move from a home we’d been in for over thirty years to be closer to family. I took care of everything involved with the move because he couldn't.
After the move, I arranged a family member to stay with him when I had an appointment. I only took walks of 10 to 15 minutes because I was afraid of leaving him alone any longer than that. I worked out at a gym only while he was in physical therapy. I made sure I got that much exercise at least because we couldn’t afford something to happen to me, too.
He was too weak to walk through supermarkets, so I would leave him on a bench at the front of the store after getting him to promise he wouldn’t go anywhere and hurry through my shopping, not relaxing until I was on my way to checkout where I could verify he was still on the bench. I helped him with his showers, doing most of the work, supervised him brushing his teeth at least once a day, made sure he took his medications on time—well, all of you know the drill. And I dealt with the occasional bouts of stubbornness, thankful that I never had to deal with the aggression that some caretakers of people with dementia face.
And now that it’s over, my home is too quiet, and many days I don’t know what to do with myself. I honestly hadn’t expected this, but this is the first time someone I was currently living with and had been the sole caregiver for has died. Caretakers of people dying from cancer, etc., go through some of this, I’m sure, but dementia takes so long compared to so many other terminal disorders. Caring for someone with dementia becomes your whole life for such a long time.
Would I want him back the way he was the last few years? No. It wouldn’t be fair to either of us. But I miss the person he used to be, and I honestly don’t know what to do with myself now. I’m sure I’ll figure it out eventually, but I just wanted to share how I feel as a kind of heads up to the rest of you, especially those of you dealing with a spouse with dementia who is still living at home. We get so wrapped up in the daily demands of life with dementia and never think about what it will be like when it's over. Because one day it will be.
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I hope this will be supportive and helpful to you because you have been through a lot. My dad had cancer for a LONG time before the metastasis finally took him. I just want to hug you so badly right now. I would be doing the dishes at my house and suddenly Mom would be at the front door. (Always welcome but she was so lost.)
As soon as you feel up to it please try to get together at your church or synagogue or grief group. ... wherever it may be. You do have people out there that care for you and will help you care for others and be joyful. Maybe do something in a group that will benefit others....when you feel up to it. I do believe in time you will feel better. As a therapist told me, "You have to go through it to get out of it." I am currently reading a book called The Book of Joy- The Dalai Lama and Archbishop Desmond Tutu with Douglas Abrams. (The Dalai Lama and Archbishop Tutu are good friends...) It is actually giving me much food for thought. Perhaps it may interest you? I don't know. But I do know that you will get through this and that there are other willing to be with you and love you and help you find your way back to Joy. Please give yourself some grace and THEN as my colonoscopy's doctor's staff t- shirts say "Get your rear in gear!" LOL. Much love to you.@bclane
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18 ReactionsYes hugs. Touching. We admire your resourcefulness, resilience and strength.
All should watch Pixar's movie Up. After Ellie passes, she wants Carl to continue their adventures.😭.
I suggest the "inner journey." While you are doing stuff, start looking at your life, what you've done and accomplished.
Meditation and studying philosophy and religion help. You may find your Self. Who you really are (Alice's caterpillar - Who are YOU?)
Once you have your Self, you can handle anything, and know what to do in all situations.
Carl Jung said "Those who look outward, dream. Those who look inward, grow."
It started for me only in the last ten years, after I retired and stopped running around like her (Alice's) White Rabbit.
I understand the Beatles' Fool on the Hill, Fixing a Hole, and Within You and Without You.
This is your time. I hope you find the peace and joy you have earned.🙏❤️
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17 ReactionsI am so sorry. I know you are exactly knowing, and right, about this.
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5 Reactions@blclane Your poignant message this morning stirs my soul. I'm sorry for your grief, I wish there was more to say, but why does grief have to take so much time? I applaud your unconditional love where your husband and his dementia stayed by your side day in and out (even on that bench). I feel what you are going through - my own husband sick and down for days. The house was so eerie, like a ghost town, and I was destroyed over feeling so totally alone and how I'd feel if he was no longer physically here. Like one of the other posters, suggested get yourself in a grief program at your church, or through hospice. My mother died 30 years ago, during that time I moved, and when I got to the new town, years after she passed, I attended a 6-month workshop held by a priest. I can't even begin to tell you how much that helped me move forward. I'm glad you're near family. See them, be with them, surround yourself with others at a charitable food pantry. Volunteer a day a week at a local hospital to keep your mind off things and your empty house. I was amazed over a post I recently read from someone on this site. She told us she never dreamed she'd have a life after her husband's dementia, and what she described was a rich and meaningful life of things she wasn't able to do when he was alive. This doesn't make it better today, but hope and faith, and just knowing that God's on the bench, now watching over you. Time will get you there.
Best, Karla
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12 Reactions@shmerdloff Wow, I really like this post. Carl Jung's words you posted: "Those who look inward, grow." Thank you for this post. Kind, thoughtful, and spiritually deep. The kind of deep that gets us thinking about our life, and the things that really matter.
Best, Karla
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7 ReactionsExpressed perfectly. Looking forward I imagine I will experience the same. Even now when my husband struggles it brings tears to my eyes not wanting to see him uncomfortable but fearing life without him. The dementia path is one long road of grief.
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13 Reactionsbclane, my condolences. Your comments could be my own - I've been grieving for nine months now, after a six year journey down that minefield of dementia with my wife of 73 years. At 92 now, the only times I'm able to get rid of that emptiness feeling is when I'm at a weekly grief support meeting with others who have lost their spouse/partner, or visiting family. However, I find that there is a difference between the two gatherings. In that, I am not able to completely express my grief with family, while at the weekly meetings it all comes out. Family is great and they are a lot of support, however, they all have lives to live, families of their own, jobs, plans for the future, etc. I suppose my hesitation to share grief with them is to not take away any of their current planning or daily living with my own feeling of emptiness.
There is one problem I've encounter, that I find no solution for - that is, no matter the relief gained from group meeting or family gatherings, as soon as I return to that empty house that we shared for 37 years, the house that contains everything we gathered together for all of those 73 years, all of the cold feeling in the gut and the emptiness returns. One little bit of relief at home are the two dogs that help keep me busy caring for, but are not great conversationists, in fact when I talk to them, which is often, they will sometime just turn there backs on me and walk away - no respect at all!
I've actually joined a second group weekly meeting just to expand on the relief they provide. Please try to locate such grief support programs in your area, there are many of them available, some online, if you don't want to travel to meetings. Contact your local or state senior citizens or elderly care office, they will have information on what programs are available in your area. You don't have to be a senior to use those services.
All the best to you, stay strong, you are not alone.
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25 Reactions@jenniferkr And the confusion of love, resentment, love, aggravation, love, duty, love, faithfulness, love, fear, fear, fear, love.
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2 Reactions@bclane I'm glad I read your thread again this morning, as I landed on @jehjeh post about her losing her loved one, and all the things she never dreamed she'd be doing now; art in apparently, a space she had with her husband that she never thought she'd use, volunteering, etc. I was amazed over her post as it shows the resilience of someone who was a caregiver, like us, and was able to rebuild, never lose the love and memories she had of her loved one, but over time, she was able to open the doors on a new opportunity, to fulfill her life. I kept her post, because it's hopeful, and shows, that we can fill our lives with people and things that help ease the pain of losing, our loved ones. Thanks again for your share.
Best, Karla
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7 Reactions@shmerdloff - My name is Campbell Armstrong. I have been living with dementia for about 3 years now. I played drums semi-professionally for 15 years, so music has been a HUGE part of my life.
Every single day, I listen to music as my "escape". I play along on my desktop with my fingers. Sure, it not like the real thing, but it invokes wonderful memories of former years, without any sadness.
Just yesterday, I had a phone call with my first wife - we have been apart for 35 years.
We spent a long time talking about a huge range of things, a lot of which I had forgotten. Somehow, it was really therapeutic for both of us - she reminded me of many things I had forgotten about, and we had a good laugh about other stuff.
What it reminded me of, is that we have many changes and "periods" in our lives, some good, some - not so much.
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