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Guilty Pleasures
Psalm 32:7 says: “You are my hiding place; you will protect me from trouble and surround me with songs of deliverance.” Was the author of this passage addressing dementia caregiver, too? I would like to think so: Surely, the presence of "the Lord" or some other higher power is working through this incredible support group.
Many of us start our mornings by checking new postings in this forum. Sometimes, George will call me a dozen times before I get a chance to scroll through the headings--or to finish composing a post.
Consequently, I feel guilty about not giving him my undivided attention. So when he calls and asks what I'm doing, I tell him that I am looking at my "Mayo porn"--one of my guilty pleasures ("guilty" because I'm enjoying myself without his participation and because I should be more attentive to him--or be doing chores, like beginning the process of döstädning).
The other guilty pleasure is my glass or two of wine every evening, and occasionally, a martini. My "happy" hour--but it's without George because he can't mix alcohol with his meds.
For me, a guilty pleasure is a get-out-of-jail-free card. It's a notch above self-care, because indulgence can create a sense of fun--real or imagined.
You don't have to share your guilty pleasures, if you wish to keep them private.
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@georgescraftjr The challenge with being viewed as a cheerleader is that others may think I don't take things seriously. What we're up against - whether the early stages of this disease up to the last stage - is extremely difficult. Even though many of us may have spouses somewhat independent, it's scary, and forces up to always be picking up the pieces we used to share with our partner. I do try through my posts, to portray hope, but I know, that what every caregiver on this site is dealing with is intense and overwhelming, at times. To those that have lost their spouses to it, I'm sorry. I feel your loss. It's easy to give advice, but when I do, I always ask, "what would I do if that was happening to my husband." Please know, this cheerleader doesn't take what we're up against lightly.
Best, Karla
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6 Reactions@kjc48
My teasing you in no way suggests that you take any aspect of the demntia journey lightly. On the contrary, you are a great role model, showing us how to find joy and to live life with modified gusto albeit on a dual tract. There's nothing to take lightly when a loved one becomes increasing incapacited, or when losing someone to dementia or some other illness.
You deep faith reminds us that we are not alone in this journey.
Hugs,
Lilly
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5 Reactions@georgescraftjr Absolutely no worries with any teasing. In reading everyone's post, it's easy to feel their pain, and sometimes, the last thing anyone wants is someone who appears "holly go lightly...aka "a cheerleader." But this I promise, I'll continue to enthusiastically support my Mayo Connect friends to live life with modified gusto even on their worst days. Thank you to every caregiver who supports and does the same for me.
Best, Karla
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4 Reactions@fred1 So sorry for your loss.
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4 Reactions@ocdogmom
Thanks for being one of the first members to help me find balance in my life. I am humbled by your help and the help of others through which God moves:
This morning I swam and sat in a sauna afterwards, without feeling guilty for the first time. I usually feel guilt because I have various survivor's guilt. (These words are etched in my soul: "Never forget that this has happened/Remember these words." Primo Levi. I can never forget--and not forgetting puts EVERYTHING into perspective.)
But this morning, I was too numb and exhausted to feel anything. George kept me up for five hours again last night--and he keeps calling out whenever I try to nap during the day! That's been going on for weeks and weeks now, while we experiment with new meds.
You, and too many people to public acknowledge, deserve your daily pleasures. From my perspective, a few examples of the saint-like members our littile community--besides you and our devoted mentors and director--are: @labrown @trishaanderson @kjc48 @dbamos1945 @grandmajoan @shmerdloff @pcetng0202 and @scottrl. I am no saint: I have broken all the rules of how not to talk to someone with dementia.
With gratitude,
George's Wife
P.S. I continue to pray that Tom will be in good enough shape for your daughter's wedding.
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6 ReactionsLilly, all of us have broken every rule on what to say and what to do or not do. That's NOTHING to feel guilty over. That's just daily living. I harbored the most guilt when my mother died in 1996. For the last 20 years, I've been carrying it, sad that as an only child, with very few living relatives living (my father died when I was 18, the glue that kept us all together), that she and I couldn't have figured out a way to have had a better, hands on, more loving relationship. She lived in one state, I was in working full time in another, and Eddie was in another. I wasn't there for her the way I should have been in the prime of my career, and challenging dealing with the "last five years" I just had to continue working (for a retirement pension), while her Asian doctor told me I needed to live with her and handle her affairs. She was dying. I was there off and on, I hired people to come in, and did all the right things financially for her. I just didn't provide the "emotional" support what she really needed the most. And for that, that's where the guilt sets in. I am sad but I finally have come to terms with it. I tried, I did the best I could do, and that's all you can ask for. In prayer, I've asked her for her forgiveness a million times. Dealing with MCI, Alzheimers, Dementia - any serious medical situation like cancer, etc. - is full time. and a commitment. Why feel guilty over anything. My God, You are giving it your all, even at the detriment of your own health. I don't have guilt, I feel fear of the unknown. And obviously, so much daily confusion having been pushed out of my house where the financial aspect of what we're up against is stifling, and to where I'm having to make future plans on selling the house after the remodel, where we go, where should we go short or long term based on a progressive disease, and all the other decisions I have to make because of his last year's diagnosis.
I have to make all these decisions alone with where we go, what we do, while the "elephant" in the room is his memory loss, his probable progression, and the stress associated with increased caregiving. Please don't feel guilt. Love yourself, for everything you continue to do for George and for others on this site. Love, Karla
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8 Reactions@georgescraftjr
Yo! Swimming sauna. Very refreshing. Not guilt-taking care of yourself. Again, if i am not for myself, who will be for me? If i am for myself alone, then why? And if not now, when? Hugs. Shmerd.
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4 Reactions@kjc48
Practice what you preach, Karla: and don't feel guilty about not having given up your career to care for her. Besides, you are wasting energy feeling guilty. You're not even Asian!
...and remember, you need not fear the unknown. That's about our only excitement we have left. Knowing the end of a book or movie spoils the fun.
In any event, we are never alone:
The Footprints Prayer
"One night I had a dream…
I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life. For each scene I noticed two sets of footprints in the sand; One belonged to me, and the other to the Lord. When the last scene of my life flashed before us, I looked back at the footprints in the sand. I noticed that many times along the path of my life, There was only one set of footprints.
I also noticed that it happened at the very lowest
and saddest times in my life
This really bothered me, and I questioned the Lord about it.
“Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the
most troublesome times in my life,
There is only one set of footprints.
I don’t understand why in times when I
needed you the most, you should leave me.
The Lord replied, “My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you."
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7 Reactions@georgescraftjr It's amazing that you would send me the "Footprint Prayer" tonight - I gave that to my mother when she got sick and I have it right here on my desk. I love that beautiful prayer. Thanks for reminding me that we are not alone. Best, Karla
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3 Reactions@georgescraftjr Worthy of posting again this beautiful Sunday morning. What a great prayer to remind us, we are not alone. Your counter to "fear" is the "excitement" of what's left to come. Truly, all in one's perspective. Thank you for reminding me.
Best, Karla
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2 Reactions