Fighting Isolation: Caregiver’s World

My husband is in the last stages of Lewy Body dementia and can no longer do anything for himself. He is in hospice care and he is at home where I am his main caregiver. This is my world.

One of the biggest changes for me after my husband’s stroke was accepting all the things I could no longer do. When he was still able to manage by himself, I could do music at church, volunteer with my favorite organizations, and meet with others for exercise. Since the stroke, and after bringing him home, I can’t leave unless I have a sitter to be with him. I have to prepare him ahead of time by giving his feedings and medications before I leave. I can’t be gone for more than three or four hours max – usually only two.

I started losing touch with my community and feeling isolated.

But now, after six weeks with my husband at home, I’m finding new, small ways to get involved that don’t overwhelm me or cause more stress. This week Mom has joined me and we are stuffing baby bottles. Yes, you read that right.

Baby bottles, only one of four boxes.
Fold and stuff with these

Every year, one of my favorite organizations, Northwoods New Life Resource Center, does a fund raising campaign. Plastic baby bottle banks are distributed, mostly through churches. People fill them with spare change, bills and checks and bring them back within a couple weeks. Last year I went to New Life Center and helped stuff instruction sheets in each bottle. This year Mom and I are doing it from home. It’s the perfect, low stress activity. I’m also able to do some chores, like washing donated clothing. I have frequent contact with others and get to be involved in a great cause. Volunteering from home, what an idea!

A big anti-isolation factor for me has also been learning to utilize the helpers I pay for and the ones that come with Hospice enrollment. My hired company gives me two morning hours and two evening hours each week day and every other weekend. Now that we know each other, my daily helpers let themselves in and tell me to get lost. I use the time to shop for groceries, pick up prescriptions and other odd errands, or I go over to spend dinner time with family. My Hospice volunteers give me a couple hours more in the middle of the day, once a week. I want to use this time to find out if I can still remember how to ski – it’s a bit sketchy…

Hospice has also been a blessing because of the number of people who come to us in an average week. The husband and I see the weekly volunteer, a nurse, a CNA, a chaplain, and a masseuse (she works on the caregiver too, yay!) We’ve gotten some good conversations and some new friends.

As hard as this time is for the husband and I, there is no sense in adding to the sadness by letting ourselves feel isolated. Separating from meaningful activity and caring community only hurts us. We don’t have to let that happen, and won’t.

February Goodness: Volunteering

I can hardly believe February is nearly over! So many good things to report, and many I missed writing about because I was busy living them…

What an amazing event! And I have gotten to volunteer to help with it, in a very small way, for the third consecutive year. The American Birkiebeiner is the largest cross country ski race in North America and the third largest in the world, and it was created by a visionary man who lived right here in Hayward, my home town.

Part of my amazement is the way the race has adapted to pandemic times and become even more available to sports enthusiasts all over the world. The Birkie went virtual. There were still over 8,000 skiers participating this 47th year of the race but half of them were not here in person. Yesterday I got to watch some of them as they passed the Fire Tower Aid Station. Unlike other years, they had to bring their own water containers and food, but we dispensed water and electrolyte drink and watched out for those who might need medical attention.

Our cozy aid station with drink systems in place. Challenge was to keep the hoses from freezing.
Volunteer and Birkie employee, keeping the fire going.

It was a perfect skiing day with temperatures getting into the 30’s and barely any wind. Many skiers remarked about the snow being just right. What they complained about were all the hills. There are few places that have the kind of hilly, glacial terrain found in the 43 K forested trail of the Birkie, so skiers have a challenge to prepare for it. I talked to one man who thought he had prepared but was seriously considering cutting his distance in half after reaching our aid station.

Most skiers would expect to be skiing down hills like this, but not in the Birkie, no, no, no. Every “down” is partnered with an “up”.

What did I and the others on our team do? We set up the aid station with water hoses, touch-less dispensing systems for water and drink, got the fires burning for those needing to warm up (but seriously, there were people with shorts and T-shirts in this race and they still thought they were hot) and served as the cheering audience. No spectators were allowed this year. I mixed up several batches of Noom in the 10 gallon coolers, answered questions (like “how much farther do I have to go?”) and held ski poles while people filled their drink bottles.

It was a great day to be outside. We started at 7:30 am and were done by 2 pm when most of yesterday’s skate skiers had passed our station. As I watched some of the last stragglers wearily climbing Fire Tower Hill, I remembered my Grand Canyon experience, and was glad I was going home in my truck and not skiing another 12 K out in the forest wilderness of north Wisconsin.

These were the elite, early wave skiers. The later ones did not power up this hill with the same energy.

I will probably never ski the whole Birkie Trail – it’s not on my list – but I would like to hike the whole thing. Maybe this summer will be the right time to do it. Tell me if you want to come along. It will be epic, in one way or another, I promise.