Progression drives caregiving and that frustrates the hell out of me. Multiple Sclerosis’ unpredictability has thwarted most of my attempts to anticipate it. “Psychic caregiving” might work, but I’m not that gifted.
An enigma of caregiving is that I’m locked in a fight I know I cannot win, while progression constantly ups the ante.
“Keeping Patti at home” was such simple sloganeering in the early years. Remodeling regularly to adapt to physical progression, and just raising the bar on my limits of endurance stayed the course for the first 7 years.
Progression to the double whammy of bowel and bladder incontinence and “dementia like” symptoms was the turning point. Our daughter and her friends returning from elementary school each day were encountering too much for kids that age to have to cope with. Patti’s cognitive symptoms prevented her from directing her own care and basically made part time homecare helpers impossible to incorporate into daily living.
Somehow for another 8 years, basically on my own, I still managed Patti’s care and the environment to keep the house a home. Progression however kept increasing “at risk” situations for Patti. It was more than scary when Patti started a fire on the kitchen stove while unattended. Catheters were experimented with but Patti would get confused and pull them out. Our new “physically” accessible home boomeranged on us as cerebral symptoms rapidly progressed. Falls actually increased, and Patti was pulling things down on herself. She was getting outside confused and disoriented.
Time was my kryptonite and after 15 years of “keeping Patti at home” Patti and I jointly explored and decided on the transition to the 24/7 care facility era. Patti has never expressed a doubt about the decision.
Nor have the nearly 3 yrs of the 24/7 care facility era been an end. ‘Hands on’ caregiving continues to occupy at least 40 hrs a week. The majority of afternoons/evenings each week I bring Patti home or out before transferring and ‘tucking’ her in to bed by myself at her care facility. This phase has been about evolution to professional team care and most importantly safer care.
Progression is the only constant in caregiving. It relentlessly crushes home caregiver motivation, inspiration, or whatever. I can not ‘sugar coat’ that reality. … On the other hand, if you can appreciate the esoteric reward from finishing your morning coffee then running full speed into an ever higher brick wall day after day, year after year, you will do fine. It can be done.
('series' to be continued ...)
Don't know what to say Patrick except you've been wonderful and so has Megan. I wonder if I would fare as well, I think not. The three of you have a specialness about you, accepting the changes and dealing with them to your very best.
ReplyDeleteI think those graphs are a good way of seeing things, seeing where you are. Probably a little sad too in knowing where you are in some things, but you've all given 100% to each other and that's what love is. Rache
You need a hug. You need a massage. You, and any other caregiver needs so much more. I admire you. I am a loss for words. Enjoy your week with Patty :)
ReplyDeleteIn Christ,
Gabrielle
it is so hard i am sure {{{{{{{{{{{Patrick}}}}}}}}}}}}}}
ReplyDeleteDeb
Your commitment to Patti is not debatable. Few people I have known would continue in the same stride you have all these years. Yes, it's hard. Yes, it's not fun. Yes, sometimes it makes you want to drive the cat crazy with new-found gadgets. Sometimes, you just wonder, 'what next'?
ReplyDelete(((HUG)))
Jackie
God bless you! :o)
ReplyDeleteLisa
I can't even imagine your living with this Progression you describe, yet you paint such a detailed, poignant picture that even VanGogh couldn't touch.
ReplyDeleteI sit here and wonder how many husbands could go this long dealing with the daily brick wall crashes as the cognitive and physical symptoms of their wives' condition progress over time? And in the future lies no hope for improvement. Only peace for the ones living with dementia. I imagine also that many people with MS and other deteriorating conditions are often left by their families in a 24/7 care facility, and over time, forgotten because they cannot face that brick wall day after day.
When I read your entries, I ask myself, could I do what he does for my husband? I would like to say yes. I hope it is yes. But could I physically do what you do day after day? Even if I wasn't employed outside of the home, could I? I don't even know if I have the stamina and fortitude for such a ride. You, however, offer hope that there are those who can. With great courage and determination and what? What do you have that others don't have who find themselves walking sadly away from the one they love because they can't care for them anymore? What is it that keeps you going back to the brick wall day after day? Is your love greater? Are you healthier? More committed? Great support system? Can others find it within themselves or without? If someone were facing what you have boldly and compassionately faced for all these years, where would you tell them to go, what would you tell them to do... to arm them, protect them, encourage them, and support them in the life of their next 25 years? I think I know, but I wanted to read your words... is there a secret formula for success in caregiving? or is it trial and error all the way? I pray for your continued strength and health. Bea
As a nurse we see the caregivers often when their loved one is hospitalized. I often wonder how the older folks do it as I know it is hard work. Even when you love them it is hard work. Your journal is so interesting as it gives me an idea of how you and other cope day to day.
ReplyDeleteJulie
Patrick,
ReplyDeleteYou are a mountain climber. You would beat any highest mountain climber. Bam
Oh Patrick you are the exception to the rule and my hero! I have three good friends with ALS and one husband had a nervous breakdown early on and threatens her with nursing homes (she is not that bad yet). The other husband internalizes it and turns to Coors light. It's very scary that you never really know about the "sickness and in health" until you're there. Luckily Dave and I talk about the "when's & how's" now.
ReplyDeleteBless you and your family!