Special needs – Becoming A Family Caregiver

Holiday Preparations

Donna Steigleder / December 9, 2018

Getting ready for the holidays at my house incorporates specific considerations that many families who do not deal with chronic illnesses do not consider as part of their preplanning task list. Since most of you readers have similar concerns, you probably know where I’m going with this but for new caregivers just starting to deal with the holiday season, here are some of the staging considerations that I do in advance to help the gathering go as well as possible.

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So This is What a Day of Freedom Feels Like

Donna Steigleder / September 22, 2013

My daughter approached me during our vacation and asked if I would be interested in speeding the day with her “escaping” from our caregiving responsibilities and just doing what we wanted to do. She knew I usually worked on the weekends but thought that I should take a break and do something just for myself. She also confessed that she, too, needed that break from caring for her special needs child as well. Falling into the category of “great minds thinking alike,” I told her I had been thinking the same thing. We both needed a “me” day so, of course, I said, “absolutely!”
Well, yesterday, she made it happen. Her husband who works almost every weekend was off. She checked with my step-son, and though he is often busy also with work activities on weekends, he said he, too, could be off. So her husband got baby duty, and my step-son got daddy-duty and my daughter and I got no duty, well mostly. As a caregiver you never completely get a day off unless you go out-of-town, alone. We both had our morning activities to complete with our loved one before we could go but we got away from our homes by 11 which was remarkable. Usually when Lynn and I have somewhere to go, our morning process is anything but smooth but not so yesterday. All was smooth sailing and in fact, I finished up so early, I was even able to do some outside decorating changing my artificial flower display (I do NOT have a green thumb or time to water plants so it’s either fake or nothing) from spring/summer to fall colors.
On my way to her house to pick her up, I stopped and got some more flowers for outside and then strolled into her house to say, “hi,” to my grandson who was absolutely adorable even with nasal congestion from his cold. “Loving” him from a distance, I made contact with smiles and gestures (can’t get close enough to pick up his germs to take home to Lynn) and then I escaped with his Mom for a day of freedom.
We went out to lunch and had dessert, then we decided to go shopping since neither of us ever can just “shop” for ourselves. It was awesome! During our meal, neither of us had to stop to feed anyone else first while our food got cold or clean up spills or do anything other than concentrate on our food. With shopping, we split up knowing that we didn’t need to “be together” to “be together” and each had the freedom to browse or buy as they saw fit. With the use of cell phones we kept up with where each was in the store and we mutually did our own thing. It was relaxing and carefree. We enjoyed good conversation and both bought some things we wanted and needed and actually had time to try on before we bought it.
We lost track of time somewhat and suddenly realized it was getting to be the time we had said we would be back but in reality that wasn’t bad either because we had an estimated time for return rather than a deadline.
I really needed this day. I know I had forgotten how it felt to be able to just take a day off from responsibilities. Sometimes I worry, as I know she does, about what we share with others about our feelings of isolation and being trapped at times. It’s not that we don’t want to be where we are or do what we do. We love the ones we care for and want to take care of them ourselves and don’t regret our decisions associated with making that commitment. But sometimes it just gets overwhelming to do the same thing day in and day out and not see an end in sight. I admit I get selfish a lot. I look only at what meeting his needs does to my agenda and don’t consider the fact that he wouldn’t ask if he could do it himself. I wish I had the patience and compassion I was able to display in the early days of caregiving before I started feeling burned out but I’m getting tired…physically tired, mentally tired, emotionally tired. However, having a day like yesterday helps me to cope with that fatigue and helps to recharge my battery.
Thanks to my stepson and son-in-law for sacrificing their day off to let us have that time. Bless you both for caring and loving us enough to see that we needed that time. Thanks to all my children, their spouses, my parents and in-laws, brothers, sisters, uncles and aunts, friends and readers who offer support, encouragement, and hands-on help. I don’t know how I would make it through the day in and day out challenges of our life without you. God has truly blessed me in this life with each of you.

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Now This is What I Call Accessible

Donna Steigleder / September 5, 2013

For the first time in eight years, Lynn has been able to “swim” in the ocean. He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing in his face; he was having a blast) and so were we. So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap accessible house on Emerald Isle in North Carolina. She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first come first served basis. We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department. Those chairs are incredible! They have huge back wheels, slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet. Therefore, when you get the chair in the water, it floats up. It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize and on Wednesday, he hit the beach again. Though, my husband thinks he’s brave; I just know he’s crazy; but he wanted us to tie a rope to his life vest and let him float in the water without the chair! He was convinced that the vest would keep him from drowning. We tried to argue but he was not budging. So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself. He finally saw that and agreed that was not a good solution. Finally we compromised. We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective. He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him. He’s finally realized he needs a day of rest between events and that has helped. He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around. He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive to us both. Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role. Plus his son is much stronger than me so he’s helped with so much of the moving and lifting. We are so blessed by our supportive and loving family who have often put our needs before their own.
We have also have our grandson with us as well as my parents. Altogether we have had eight adults and 1 child (age 15 months so he’s into everything). Both my husband and the baby are special needs so we have all taken turns relieving the baby’s parents and they in turn relieve me. It really helps to make vacation time manageable; otherwise the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable. To be honest that has been the case for many of our former vacation years. Not so, now. We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator. I’m really excited because the shower is still a bit of a problem here. They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and shower him just outside the shower itself. It’s a bit cool doing it that way though plus he can’t take his shorts off since it’s outside and could be viewed from the street. Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs. It should be that all people can have the same opportunities to access the beach; not just those with two feet. Emerald Isle is such a community and I’ve been very impressed with them. If you’re looking for a great summer spot, I highly recommend them.

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