Michael's space

It's been a  month since i last wrote, and, unfortunately, not a lot has happened. Peg moved home with the intention of getting a good start on clearing out the detritus in her condo so we could prepare it for sale. I think she was a little overwhelmed with the notion, so she spent most of her  time reading old letters and the cards she got while in the hospital.

 

I went over this week-end and got her bedroom, the kitchen and the living room cleaned up...we got moving boxes and took artwork down from the walls, put together a few bags/boxes of clothing to give away, and emptied the kitchen cupboards of food that expired in 1999.

 

While I was there, Peg got a voice mail from someone she met on a bus in downtown Seattle. He asked her for $2 and she gave it to him; he asked for her phone number and she gave that to him as well, and he now apparently calls quite frequently. This is obviously really concerning to me; there's a definite disconnect in thesafety center of her brain. When I explained to her that she should instruct this guy to not call her anymore, she seemed to think that was a ridiculous request as nothing bad could possibly come of it. This isn't the first situation where she's either ignored some obvious warning signs, and/or opened herself up to a potential danger.

 

We're going to take a second run at the condo next week, then Brian Lavery (the real estate agent we found) will arrange for carpet cleaning, painting all the walls and a deep house cleaning as well.

 

I've found five or six houses that are big enough for the whole brood, and am arranging to either visit an open house next week or a private appointment/viewing. I'd hoped to be moved by her birthday in May, but it's looking now by July.

 

Hope you're all well.

Hello Everyone -

 

It looks as though Chapter 2 of the Elder Health Saga is now officially over. Peg went back to her condo on the 13th (last Friday), so she is back in the city, with her home phone and cell phone and adjusting to life.

 

Thanks again for everything, and hopefully we'll see many of you at her 70th birthday in May.

Thank you for all the cards and calls and flowers and emails and good wishes. They meant the world to me. I hope to see you all - or as many of you as possible - this summer.

Hello Everyone -

 

Please find a series of mails catching everyone up - apologies for not updating the blog. Work has been beyond crazy recently, very busy, and Peg is getting more independent and stronger every day. She went to see Memphis, The Music today at the 5th Avenue Theater in Seattle.

 

We are putting her house up for sale so that we can finally purchase a larger home (great time to buy, and since we're selling two places) that will have room enough for all five of us.

 

Peg turns 70 on May 16th. Wouldn't it be wonderful to have a gigantic celebration at our new house here in Seattle with friends from al over the map? I'd love to hear from those of you out of state to see if you might be interested in visiting. It doesn't have to be the same week-end as her birthday; any time that month would be a great time to celebrate.

 

 

I may be the meanest best friend on the planet, but it seems to have worked.

 

I have the most joyous heart.

 

Please indulge me the length and detail of this message. It’s important to me – and will be important to Peg one day when I read it to her – that I get this right.  The last five days are a story of friendship. Of determination. Of ass-kicking. Of fortitude. Of holding the bar high.

 

After our conversation Friday night, Peg and I worked over the week-end to arrive at some clarity around why she is here with me. Why I will not let her indifference hijack my life.  Why this house – a house I earned – is a house of the living, and the triumphant, a house where we dream and, each day, being grateful for being alive, we chase the day and we wonder what awesome opportunities the creator and the universe will offer us.

 

Sunday night, we went to bed at 10:30. “Why do I have to go to bed when you do?” she asked. “Because this is not the Holiday Inn and you are not on vacation,” I replied. “This is a home for you to recover and recuperate safely. I will wake you up at 6:00 AM tomorrow when I get on the elliptical. You will be out of bed by 7:30. We will get you dressed and  in your chair by the fireplace by the time I am ready to go to work at 8:40. Breakfast will be ready for you at the fireplace. Lunch will be in the fridge. Pills set in boxes by the hour. Chair to exercise and exercises in the living room.”

 

Monday morning, Peg is at  the edge  of her bed at 7:30. I lift her and we walk to the bathroom. At 8:30, she is DRESSED – by herself, the first  time in FOUR MONTHS. We walk to the fireplace chair and she sits with her breakfast. People will be visiting. The dog playgroup leader will be there at 10:30 to take them to Marymoor. But she is up and alert and sitting with breakfast. She is alive. Not breathing but immobile alive. Not awake but  helpless alive. She is alive. We decide NOT to have the home care people start. They will be wasting their time J

 

Monday night I make dinner, we have drinks, a fire and a wonderful night. She again asks why she cannot stay up all night and watch TV. I repeat that I am not the guest services director for the 136^th PL Holiday Inn.

 

Tuesday, I go to her room and gently say, the way my mom used to say to me, “Peg, it’s 6:30. The day is awaiting our presence and our passion.” At 7:45, Peg is dressed and in her chair – of her own volition – she has chosen to be a participant in her life, instead of an observer.

 

We have specialists coming in throughout the week and she likes them all. The Occupational Therapist compliments me on how well prepared the house is for Peg. The PT gives her new exercises. The nurse reports that a critical blood viscosity number is great after a minor emergency Friday.

 

It is Wednesday and we are by no means finished. But the path is brightly illuminated and we walk in faith together, and I feel like we’ve conquered something mighty.

 

If you read, but never reply to this message, please reply. It  would be so great for me to read your responses to Peg. In fact, it would be so great for me to hear from so many of you I have never heard from.

 

We have been to the abyss and we walked, and I carried her, and we stumbled and lost our faith, but we’re on the way out toward the light.

 

Say a prayer of thanks.

 

january 3, 2009

 

Peg and I had a long talk last night and rather than continue to allow her to make decisions (or use her input to significantly impact decisions I make), we’ve agreed that I need to start making more decisions for her well-being. So many things come to mind: she insisted she didn’t need a different bed; I think my roll-out sofa is too low to the ground. She didn’t want any work done on the house because of the expense; I had the bathroom re-done (tub transfer bench, grips, etc.) and she’d be in far worse shape without them.  I’ve also put up web cams in a couple of rooms in the house.

 

In addition to PT/OT, I’ve added home health care (non-medical assistance) to start this week. Someone will essentially be here from 8 – 5 every day (no insurance coverage, so we’re paying out of pocket) to get her out of bed, dressed, fed, etc. This is another item Peg did not want/didn’t want to pay for, but it’s crystal clear to me that she’s in danger if I leave her home alone. A nurse will also come in a few times per week to check her condition and take blood tests.

 

The thought of going back to a nursing facility was emotionally devastating for her, and while I hate spending her retirement money and my cashflow on things like someone to make her breakfast, I also know that I need help to make this work.  The last two weeks have been frustrating for both of us  - two weeks after the Whipple last year and she was up and about – because she’s made so little progress despite my boot camp mentality. So I believe that the additional services will allow me to work normally and ensure that Peg is safe at home when I’m gone.

 

She did exercises today, which is great, but is still flummoxed by diapers and  dressing herself. She’s also sleeping a good 12-14 hours, which will change on Monday morning J

 

Hope you all had a happy new year’s eve. I’m trying my hardest to make this successful, and I hope 2009 is filled with more happy times than challenging ones.

 

January 1, 2009

 

Hi All –

 

Happy New Year. I did not post this to a blog yet, but wanted you all to get a status update.

 

Unfortunately, things are not going very well here. Peg is obviously very happy to be home, but I think her enthusiasm for coming home overwhelmed the reality of her physical situation. Our deal was that she be mobile and capable of walking to the bathroom from her bedroom unassisted. As of this morning, she’s still not able to even get out of bed on her own (I had a stomach flu yesterday and last night and was up most of the night being sick, so I woke up to get her meds and then went back to bed) or dress herself. It takes her about 3 hours to get out of bed and she sits in the bathroom for another 2 – 3 hours (when I ask her what she’s doing, her answer alternates between “thinking” and “putting on makeup”.

 

We had a nurse visit on Tuesday and we’ve scheduled OT and PT for 3x week. I’m hoping that will speed up her physical progress.

 

None of this poses a problem for the last week and a half, as I worked from home these two weeks and was able to change her diapers and dress her, get her fed and situated in her favorite chair in front of the fireplace.  However, insurance doesn’t cover and Swedish Home Care doesn’t offer services called “get out of bed” and “feed”, so I am stuck with some different options: try and get her up, dressed and situated by 8:00 each morning or try to find someone to come in daily to get her out of bed, changed, dressed and fed and then hope for the best for the rest of the day. It’s really clear that she’s not in a position to be left alone all day by herself, so I’ve got to figure that out as well. I’m contemplating a third notion: putting her back into a facility where she can have 24 hour care and therapy until she’s actually strong enough to come here to live.

 

I think we obviously took her out of QAHC too soon.

 

If anyone knows of home care who could do the  kind of things I’m looking for, or has any other suggestions, send them my way. I think my stomach is cleared J so I’m up and about now.

 

Wish this were a more upbeat note, but this is where we are.