A Cause for Concern?

In My Humble Opinion
1

Mary is retired, 59 or 60, and the legal guardian of her older brother, Joe, 62 or 63. Mary has a chronic ailment that causes weakness and tiredness; on “bad days” she requires the aid of a cane to walk.

Joe is profoundly retarded (mental capacity of 5 or 6), handicapped (unable to stand or walk more then a step without the aid of a walker), and periodically incontinent (occasional “accidents” from both bladder and bowels). He probably weighs around 220 to 230. There is also a high degree of possibility that Mary has allowed Joe’s original medical insurance to lapse and hasn’t properly renewed a policy elsewhere. (Mary will not share details on the subject of Joe’s medical insurance.)

Mary wants to visit out of state relatives (around 500 miles away) for Thanksgiving and she wants to bring Joe with her. The home she wants to visit isn’t fully handicapped accessible. There is a toilet on the main level, but no bed or bath. In order to get Joe to a bed and bath she plans to assist him ascend and descend the stairs by standing behind him, helping to balance and hold the walker in place as they go step by step—only two legs out of four on the walker can be placed on a step. Joe has never been well coordinated (even before the accident that broke his hip) and the possibility of falling while on the stairs exists. A fall could put them both in the hospital. The lack of medical insurance could then come into play.

Is there a cause for concern? Should someone tell Mary she can’t bring Joe into a handicapped inaccessible house? (There will be recriminations if she is told Joe can’t come with her.) Or is there a safe method, given Joe’s physical and mental disabilities, to get him up and down stairs?

2

This situation would certainly woory me.

At the least, I would say that some sort of bed (rented, if necessary) should be provided on the main floor and bathing should be limited to sponge baths. There is no way that Joe should ever be on those stairs–and certainly not with Mary.

It sounds as though it is not an option, due to emotional factors, but I would be checking out the local MRDD agency to seek out respite care for Mary. (Basically, the agency says “We can provide periodic respite from the primary caregiver’s burden of daily commitment” and the caregiver goes off for a day or three to “recharge her batteries” with personal activities and the respite provider babysits the person who needs the care.)

3

It sounds like Mary is asking a lot not only of herself, but of everybody else who is going to be at that house. Could they stay at a motel (ground floor room with an outdoor entrance), and just spend Thanksgiving day with the relatives?

Also, how are they traveling? If they’re going by plane, it’s not impossible but it sure poses problems.

4

They travel by car. It takes about 9 or 9 ½ hours without hitting any traffic. Heavy traffic can increase the time to 12 to 13 hours, maybe longer. Travel plans usually entail starting very early, like 4:30 AM, or starting at night, like midnight, so most of the heavy traffic can be avoided.

Mary brought Joe along for a visit last Thanksgiving. It was agreed beforehand that Joe would sleep on a couch (it’s large enough) and he’d get sponge baths. She didn’t stick to the agreement. She swapped arrangements, taking him on the stairs, while everyone else was out of the house, probably since Joe required a real bath because of an “accident.” Mary never admitted Joe wet himself, but circumstantial evidence indicates otherwise, and no one specifically asked if Joe was having “accidents.”

  1. A urine stain was found on the couch where Joe slept for a few hours on the morning or his arrival, Wednesday morning. (It was discovered a week or so after they left and it could have been the cat.)
  2. Mary did a load of laundry on the day she arrived, Wednesday afternoon.
  3. Mary did another load of laundry the day before she left, Saturday afternoon. (Mary travels light and may only brought one change of clothes for herself and Joe.)
  4. Mary wanted to get up at 3:30 AM to give Joe his bath before her son picked her up a 4:30 AM. She was upset to learn she couldn’t give Joe a bath at 3:30 AM because the iron water filter backwashed at that time and you can’t run a bath during a backwash cycle. She reluctantly agreed to wash him on Saturday night. When she is at home, Joe normaly gets his baths at night before bedtime. (The whole issue of what time Joe got his bath makes sense if she thought Joe might wet himself during the night, but even on the best of occasions, Joe has problems with strong body odor and overwhelming halitosis, so she may just have wanted him clean as can be for the long drive.)

A handicapped accessible motel room makes a lot of sense, but as a retired widow Mary can’t really afford it, so the costs would be differed to her hosts, and she’d never allow them to pay for a room so she could visit them.

5

Yes, it’s a cause for concern, and IMHO, it’s a cause for intervention, as you suggest.

We have love, pride, interpretation of responsibility, and feeling of being able to cope in a situation that is like Russian roulette, ie, has a disastrous downside.

Who can be involved?

I took care of my folks, my father with bad arthritis and a belief my mother would take care of everything as she always had, and my mother with advancing Alzheimer’s. They lived in the country 60 miles away. I coped, and coped with more, and coped with more, and would have gone down the tubes except eventually a social worker arranged for an intervention with my brother, etc, that got me to actually ask for and accept help. This was needed for my parents’ wellbeing and my own, and I was not even thinking about asking.

You can butt in before the fall, injuries, hospital bills, force a change in the situation (emotionally that would make change easier, but what are the finances?).

Get hold of a professional for starters. They’ve seen it before, and they know the resources available.

PS, respite is good, whether it’s “a wonderful day off” Mary might need or a day to do her overdue income taxes or whatever. Overwhelmed is overwhelmed, whether she wants to admit it or not.

And trust me, part of her knows that things are getting out of control.