So Thursday wasn't a whole lot better than Wednesday, the main issue being that Jack's chair broke down at about 12:15, but the doofuses at the Rite Aid where he broke down called my cell phone 3 times over the next four hours until they thought to finally try the other number on his emergency card. I got the message as soon as I returned from the Apple Store at about 4:30pm.

This is the second time in two weeks Jack's chair has broken down and I needed to go rescue him. After last week's episode I started looking more serious for a van I could just bring him home in. And I succeeded in finding a great deal on Weds, however the transfer wasn't to take place until Saturday.

I managed to get Jack into my car, never a small feat, and home. I left Wendy with the chair for a few minutes and had David go over and sit with her until I could return to figure out what to do with the chair. When I returned it finally hit me, call the local repair guy (he advertises 24 hour emergency service) and have him pick up the chair with his truck. This plan worked, but ate up half my evening and again left me completely exhausted by the end of the evening.

Friday was spent catching up on paperwork, computerwork, running around getting a new car insurance policy, getting money transferred around so that I could get this van on Saturday with no glitches during non business hours.

The transfer went just fine, I'm even more impressed with the vehicle now that I've driven it for a while. It's decent on gas for a minivan and has a fold out ramp, not a hydraulic lift with the potential of expensive repairs. It was built as a wheelchair van with a nice low floor, so it has an air shock system to keep it at the correct height at all times, this system was just replaced in the fall. Separate area controls for the heat and air. There's still a bench seat behind the wheelchair/cargo area that seats three so I can take regular passengers, too. I drove it to my sister's in Reading yesterday because I needed a day off and wanted to get away somewhere figured I'd get a feel for it over a longer drive. I was thrilled with the mileage, the comfort, the sound system. (it has a cassette player so I was able to use my adaptor and the iPhone for music. Wendy and I both enjoyed the 70 mile ride.

Also it was great to get away, just hang out with my sister, see her kids and not feel any pressure for a few hours.

So today, I take Jack out the in van with a regular wheelchair because unfortunately his breakdown on Thursday was very bad, over $2K to fix. Insurance is supposed to be helping get him a new chair very soon, so we're just going to pick up another power chair used that will eventually be his "back up".

It's been a really busy, but accomplished week.
( Payroll, Health Insurance, Jack )
Plans for this weekend- rearrange the garage to put away the air conditioners, get them out of the windows and away.

The last couple of days have been frustrating dealing with Jack.
( Warning- Rant within )
I am glad that he appreciates that this is not always easy for me. But this "illusion" he has of being independent is darn frustrating for me when I have to jump through hoops save his butt.

(cross posted to caregiving)

So back in early Feb, I took Jack to a stroke Dr at Moss Rehab. After a VERY thorough exam/interview about Jack and his situation, she ordered inpatient physicial therapy (PT) Jack went 3 times a week for about 2 months and had plateaued pretty much when they stopped about 3 weeks ago. I had been talking to the PT about the kinds of things we could install to help with his transfers, maybe a little more independence in moving around his room on his own, we were looking at perhaps a pole by his bed, some hand rails in the bathroom.

Follow up Dr. appointment was yesterday, but the Dr who saw him in Feb is out on Maternity leave. So a brain injury specialist is filling in instead of a stroke specialist.
( Details of their disbelief at Jack's independence )
Jack took Wendy and I to lunch in the hospital cafeteria after the appointment. It was good food, well priced and I realized that Jack has been eating salad. The cashier recognized him and told me how she always takes care of the disabled clients and she always helps him with his salads. LOL and I thought Jack was "anti-vegetable." Maybe it was the piles of bleu cheese dressing that kept his blood sugar up so much.

(crossposted to Caregiving community)
The CNP (Certified Nurse Practitioner) was here today for Jack's regular visit. His A1C was really high. It's been creeping up the last few times, but now it's outta control. I knew this was coming.

Since going out on his own more and deciding to buy his own food, Jack has been controlling more and more of his diet. And it's been more and more junk. Sugary cereals, frozen meals, canned stews, soups and tons of pasta, pizza, bread and fat. The really scary part is he likes to buy this "food" at the dollar store. He hardly even was bothering about sugar free stuff even, until I started getting on his case about the weight gain and how heavy he is to transfer in the last 4-5 months.

I keep saying I'm not the food police, but now it's starting to look like I am. Because Jack is making bad decisions that are affecting his health, I have to step in. It's been a real dilemma because I knew this was coming, but until a medical professional came in to back up my "opinion" with "direct medical advice." I didn't feel it was right for me to override Jack's poor food choices.

This has me wondering about the eating habits of people who live alone vs people who live with someone else. Without another person to see what you are eating, question what you are eating and why, I believe folks will tend to eat "for the moment"....ie.."It's what I want right now. It tastes good."

But then having to explain these food decisions to someone else, or share in these food decisions with someone else. The impulse for eating in the moment and whatever tastes good seems to be held in check somewhat.

Maybe this is why the formulas for life expectancy predict shorter life spans for people who live alone vs living with others. Unscientifically of course, I can think of a number of personal examples of people with diet related health issues who live alone. And of people who have lived alone who do not and their health has improved as a result or vice versa, lived with others, now do not and health is suffering.

It's probably an oversimplification. I also know that Jack wasn't very good about taking his meds when he lived alone.

Getting back to the situation here, perhaps it might even be easier if we all starting eating the same healthier stuff. Then I wouldn't have to make two different dinners. Also I think Jack went for the frozen/canned stuff because he thought it would be easier for me, or maybe because that's just what he was used to eating from his living alone, prestroke, "I'll be dead by 50 anyway." days.

It's been a year and nine months since I've been full time caregiver for Jack.
Many things have gotten easier and yet there are still times when I have to greet new challenges.

I've done some private journaling about the issues that come up as a caregiver, but in recent weeks I've been thinking about how increasingly common home caregiving has become and how hard it can be to find resources, even other peoples experiences. People want the choice to live at home instead of nursing homes and society pays a lower price by allowing that to happen.

Meanwhile I've found a Caregiving LJ community. Several stoke caregivers posting. Cool beans.