Saturday, May 7, 2011

Weighing the Risks

It has been just over a week since Robert got six staples in his head after falling during a seizure (and that was with his helmet ON!). It actually took longer than I expected but the New Home would now like Robert to use his wheelchair at all times (apparently, they didn’t get wind of the doctor’s bubble wrap idea so are going with a conventional solution).

Our family has been trying to balance Robert’s independence with his safety for most of his 45 years. We have always leaned toward independence over safety which means sometimes Robert gets hurt.

It is certainly a balance we struggle with. I would prefer Robert be both independent and safe but his abilities change (daily, it seems) which means we have to adapt and constantly weigh the risks of what he can safely do. It does not mean we are evil, neglectful, irresponsible or thoughtless. No matter who says we are.

Because of this philosophy, I have in the recent past been called neglectful of Robert.

It was a ridiculous accusation made by someone trying to get Robert to move out of his facility because Robert has seizures. This administrator was worried that Robert would fall and hurt himself or someone else at the facility, putting this “gentleman” and his organization at risk for being sued. (If I’m ever an administrator of a facility I hope my main concern does not become “do not get sued.”). Here’s a hint: the top priority should probably be making sure the residents are as healthy and happy as possible as well as encouraging them to function at the highest level they are capable of.

I’m not a litigious person (which might seem strange since I work for a law firm) but I would have sued him if I could just for being mean. Somehow, though, I don’t think the courts really care if my feelings were hurt. In my defense, I was trying to keep Robert as independent as possible for as long as possible – I wasn’t neglecting him.

There is a difference.

Instead of keeping Robert in that environment, I moved him.

When we were kids, our Mom did not want Robert to be placed in special education classes at school because she wanted Rob to live as normal of a life as possible. As much of a worrywart that Mom was, she allowed Rob to ride his bicycle without a helmet, swim in our swimming pool, and even go on Cub Scout camping trips. Granted, Rob was much more capable when he was younger but he still had seizures and a severe enough case of Epilepsy to make my parents take him to Switzerland to see a neurosurgeon, hoping he could be considered for brain surgery (it was not possible at that time).

When Robert was an adult, our family let Robert and his companion, Judy (who also has Epilepsy) live on their own for several years with only some oversight from us. They walked to the store on their own, went to doctor’s appointments together, made their own meals, took their medication and cleaned their house (admittedly, that part wasn’t their strong suit).  They did this until it became obvious they couldn't any longer.

One reason I was being accused of neglect was that Robert was not yet in the local Regional Center “system” for disabled persons. Regional Centers are wonderful in that they provide resources for families, living arrangement options for the disabled family member as well as day programs and other services such as help with transportation. There are specific eligibility requirements to be approved by Regional Centers, one being that the disabled person was disabled prior to the age of 18. There are certain conditions (Epilepsy is one) that also qualify a person for the Regional Center’s programs. Our parents could have enrolled Robert in the Regional Center when he was a kid but they refused to have Rob labeled and singled out due to his disability. (Although if you have a child with a disability, you should know that it is a much simpler process to enroll them pre-18 than when I finally enrolled Robert as an adult).

The point is, it is a personal choice to use these services and it does not mean your loved one is being neglected if you don't.  No one was neglecting Rob.  He was seeing the right doctors; he tried out numerous medications and eventually participated in medical research studies as well as underwent a couple of brain surgeries. He went to school, made friends, was a rebellious teenager and lived as “normal” of a life as possible (he just happened to also have seizures and fall down a lot).

I won’t deny that Rob had his share of mishaps over the years. A broken jaw, more staples and stitches than I can count, a near drowning and a few other close calls could make the case that we should have kept him safer. It’s a tough call, though. He is able to do things until he can’t any longer. It’s easy to look back and say, “Oh, we should have made him wear a helmet the day before he needed those stitches.”

Over the years, Robert had to be restricted from swimming, he had to wear a helmet (then progressed to an even harder helmet), he had to start using a walker to help him keep his balance and he had to be moved into a care facility. Eventually, I’m sure he will need to use a wheelchair as his balance deteriorates even further and his seizures continue to cause him to fall. One day, the safety provided by the wheelchair will outweigh his independence and the ability to walk on his own.

Just not now. Not until I’m convinced it is for Robert’s benefit and not the convenience of the care facility.

Right now, I’m choosing independence for Robert.

(I am interested in your opinion on the matter, though, so please take a second to complete the poll on the side of the page).


Kathy Lowrey said...

I'm torn between the two.

On one hand: Robert's independence is so important; and you, Sister, have gone to great strides to maintain as much of it as you could for him.
How dare anyone accuse you of being negligent?! >:/

On the other hand: Safety is vital. Taking into consideration his background and recent events just since he has moved into New Home makes me want to bubble wrap him myself but I see a wheelchair as an option.
Would Robert see it though?

Soooo, is there a happy medium here?
Would it benefit Robert to have a motorized wheelchair?
Could he learn how to use one?
Perhaps he would be more accepting of the idea if he had an option to not wear his helmet if he uses a chair.

Just a few random thoughts going through my head here

I know, fence sitting!!!!
I guess this is where you say, Thanks for nothing ;-)

Trish Hughes Kreis said...

Kathy, Thank you for your insight (it's definitely not "nothing.") It is a tough, tough decision and there probably is a middle ground. We took him with us to brunch today and there was a lot of walking and waiting in a crowded area and he was doing a lot of stumbling. It would have been much more convenient to have him in a wheelchair. That's my dilemma -- I don't want to choose that for him for the sake of convenience (mine or New Home). So . . . I'm right next to you on the fence. :-)

Other Brother said...

It is a tough decision. Seeing how he struggles to get around, even with a walker, I think it is time for him to have a wheelchair. This doesn't mean that he has to stay in one 100% of the time. I think it is important for him to stand, stretch and walk now and then. But having access to a wheelchair (or motorized scooter) could make his life more convenient. I know I'd love to be able to zip around in one of those fancy motorized ones.

Judy Musgrove said...

What does Robert want? What does he say about this? Actually creating a list of advantages / scooter/wheelchair and disadvantages may help to take the personal out of it and allow a constructive decision to be had - this is one tough call - you are doing a great job - and what a compassionate person you are! Not everyone can care for a family member to the degree that you and your family have. Kudo's to mom and dad for allowing him to be as normal as possible.

Trish Hughes Kreis said...

Good question, Judy! After all the discussion and worry about it, I asked Robert what he'd rather do. He said, "I can walk." He doesn't want to use a wheelchair but he doesn't always make the best choices (as Other Brother knows). I like your list idea because I do love lists! It's a tough decision -- one I was adamently opposed to --but am now rethinking. It's a decision I will most likely have to ease into and let Robert warm up to the idea. I suggested to Robert that we use a wheelchair if we'll be doing a lot of walking (like during the State Fair or another brunch). :-) He was agreeable to that. I appreciate your kind comments and hope to talk to you more. Take care.