The Longest Day: For caregivers, every day is long; but it doesn’t have to be sad
Our next blog comes from Roger, whose wife was diagnosed with Alzheimer’s at just 55 years old.
“The longest day.” Every day can potentially be long for a caregiver.
Caregivers can experience isolation. Caregivers can work countless hours trying to make someone else’s life better. Caregivers may forget to try to take a day off. Caregivers may rarely be thanked for their work.
But it doesn’t always have to be a sad story.
Some caregivers report that working through the adversity has made them into better people; perhaps more giving, more patient.
Almost daily we hear about new Alzheimer’s disease research. Encouragement is tempered. The “cure” will take a while – it’s still being developed.
Too late for my wife”¦I hope not too late for my kids.
My wife Jane was diagnosed with Alzheimer’s three years ago at the age of 55.
She has some long-term memory – almost no short-term memory. For her there is no yesterday and no tomorrow.
She also has no concept of what the future will actually be like. I think in her case, that’s a real blessing. Sad to think that her future is limited”¦
Our conversations are pretty limited and that can make it lonely at times for me.
If I had the disease, and she was the healthy one”¦I know she’d do whatever she could to take care of me. That gives me perspective and strength.
Caregiving. Nobody tells you what to do.
My caregiving manual would feature these topics:
- Continue to learn as much about the disease as you can.
- Be creative in devising strategies.
- Adapt as the disease changes.
- Live one day at a time
- Know that you are human and will get frustrated at times.
The disease does change. Change can be gradual and also abrupt.
When Jane was first diagnosed, I could still leave her at home. She was still functional in some areas. That seems like a long time ago”¦
I am responsible for doing everything.
In short, I have to always take care of her”¦no breaks, not ever. Just like taking care of a very young child.
Actually, I do get breaks. Like when I go to work weekdays, when Jane goes to Rosener House. Or if I hire an outside caregiver to work at our house.
Long days? Sure. But this is about helping someone who in our past life together helped me in very many ways.
My Dear Nephew Roger;
your loyality & love for your whole family, especially our dear Jane. I know you are right about if the situation were reversed. Thank you for sharing. None of us knows what tomorrow brings, we only have today, so lets live it the hilt, knowing that God is in charge. May you feel the power of that Love.
You have always been a gracious, supportive and giving human being. I know this caregiver challenge well and it is taxing even to those who naturally come by it. And you are also still raising and mentoring your boys. But as you said, if the shoe were on the other foot… Make time for yourself. Bring Eric and let’s play some music.
Roger Dodger- you are an incredible human being for taking this journey with Jane. You have inspired me in immeasurable ways and taught me about true love, loyalty and commitment. Thanks so much for setting the bar so high. Your boys will be great men due to your incredible example.
Roger, your story and spirit are inspiring. Your wife and family are so lucky to have someone with your strength, patience and compassion. My father is currently caregiver for my mother who has vascular dementia and a handful of other medical challenges. You are teaching your children the most valuable lesson of their lives.
Thank you for sharing your wisdom with us. You have been a wonderful support to Rosener House Adult Day Services.
For those of you who may be on a similar journey, check out your local adult day programs for respite.
The single thing I miss most about Jane is her spark. Thank you for taking such good care of her … and for working so hard to ensure no one ever has to say that about my nephews.
This is such a wonderful declaration of unconditional love and a amazing example for your children and others. Thank you for sharing your life with us.
My wife was diagnosed with early on-set alzheimers almost 5 years ago at age 47. She has valiantly fought this disease but it has progressed rapidly to the point where she has not recognized our son (14) for the last year. We have been to the best neurologists (I think) in different parts of the world but the common answer is we can do nothing and prescribe another medication. We are trying now trying coconut oil and hoping for some positive results. My wife was the healthiest person I ever new, exercised 3 hours a day, ate only organic food, never red meat etc. and for some reason she was stricken wit this at a young age. Does anyone have news on the bexaretone clinical trials? Thanks