daily updates

My dad has recently been emailing Melissa, Ashley, and me, daily updates about what Mom is experiencing. I thought I would post little bits of the emails occasionally, just so that everyone has an idea about how Mom is on a daily basis.

1-6 Sunday

Good night’s sleep last night; Regular calls to/from Hospice people, now, about two per day, are a lifeline of sorts with guidance about how to get through each problem.

About 8am Gail wakes, quickly becomes agitated. Light breakfast, then we read newspaper together. We are learning together how to work the electric bed, electric, inflating mattress, etc. (Jigsaw finds it boring that no Hospice people are here Sunday morning, particularly bather Rosene) Gail with some help has a modest bath with wash cloth.

The bandage was ripped off twice over last evening; each time replaced with a clean dressing but w/o packing. Late morning we repacked the wound. Also Gail and I discussed this morning the content of a conversation with the on-call nurse, Friday evening, about the next step, should the wound re-infect, which is increasingly probable with the bandage being ripped off frequently. (Fortunately the occupational therapist will be here Monday to search for ways to protect the wound including, hopefully, from the bandage being ripped off) In the event of re-infection, Gail, with support from me, family and Hospice will need to decide, the nurse says, about whether to intervene with intravenous antibiotics (in hospital or skilled nursing residence), or maintain Gail’s comfort level with narcotics while the infection (rather than the tumor) claims her.

Gail now is unable to use the walker, but is able to use the wheel chair.

Gail has had a calm, enjoyable afternoon and evening. Megan, the only visitor, came from 3 to 5:30 while I got away to go to the gym, buy groceries and pick up dinner.



1-5 Saturday

Last night Gail went to bed early, around 9.

Through the continuing night of agitation, she got perhaps 2-3 hours of sleep (for me also), ripped off her bandages again and left significant blood and wound seepage on her night clothes and the bedding.

Today the air bed was delivered and set up, and Maria talked me through use of the Hoyer lift, although I will try not to use it until the PT demonstrates it on Monday.

Gail now moves with great labor; the walker is virtually a thing of the past. Tonight she ate dinner in bed. Most recently she expressed anger and agitation when the channel changer could not be found in her bedding. Much of the panic, I believe, is not being able to find the words to describe what she wants. As we tucked her in at 9pm, she required help to turn onto her left side.

We are both hopeful of good sleep ahead.


1-4 Friday

Thursday the Hospice nurse Sandy spent about 90 minutes with Maria (Maxim Homecare), Gail and me. She is ordering an air bed for Gail, to be delivered Saturday. It has a blower motor and is used primarily for invalid patients to cope with bed sores. On Wednesday we learned from the Wound Healing Center that in Gail’s frail condition it is not likely to heal much and the best hope may be to keep it from re-infecting.

Today Hospice had a Hoyer lift delivered, although we will not be trained on its use until Monday, by a physical therapist. The occupational therapist will also return to design a protective covering for the wound. The two wounds have now merged into one larger one. Sandy interacted with the Wound Center to confirm that damage does not extend into the bone and ligature, as best they can determine, although it does go right up to that level.

Given my limited experience with medical equipment, the Hoyer lift looks quite a bit like an engine hoist (the only thing I can compare it with). It attaches to a cloth “basket” and will enable one person to move Gail, when she is otherwise unable to move herself. The cloth basket also deconstructs to enable it to be laid flat, and then the fallen person rolled onto it, before it is reconstructed/secured. Maria indicates it also works for car transfers. (Wednesday was extremely taxing for Gail (and me) to assist her in and out of the car for the two medical appointments)

Last evening was a very unrestful one for Gail. At 5am she was thrashing, tearing off the bandage, but calmed quickly with yet another dose, taking her through breakfast at 8:30-9:00. Thus far this evening (Friday) she is sleeping peacefully, thankfully.

Since Thursday the gait belt has been used for all transfers from bed to standing, etc. Gail’s right foot is now fully dysfunctional and uncontrollable, and turns outward. It is also swollen and at times a bit blue/purple.

We consulted with Dr. Campbell from the Wound Center about diabetes, which she indicates reduces the body’s healing. However, her opinion is that in Gail’s frail situation, comfort is more important than perhaps slightly better wound healing. I told her Gail now regularly snacks on almonds (great source of protein), raisins, chocolate, and an occasional donut. She smiled and indicated that in her opinion we should not interrupt Gail’s food preferences for chocolate, etc. Comfort, in her opinion, is the most important value.