Wednesday, August 7, 2013

Caregiving Talk Part 2

  1. The Accident and Hospital: what happened/who is Paul Williams
  2. Post Hospital and Rehab: Its a Great Big World and You Are On Your Own
  3. Things Almost Get Back To Normal: Now You know Things Will Never Be The Same Again, But Carry On
  4. Later On: When Things Change Again/or, They Didn't Tell Me He Could Get Worse....Dementia/Parkinsons...
  5. When It's Time To Ask For Help: Caregiver's Burnout, Pacing Yourself, Resources, Doctors, Will and Conservatorship
  6. How To Know When You Have Reached Your Caregiving Limits/Or, Something Bad Happens
  7. Nursing Homes: Making the Big Decision/Lying, Conniving and Getting What You Need
  8. Letting Go and Turning it Over With An Eagle-Eye Open At All Times: Visitations, Keeping Track of Nursing Home Care
  9. Elder Law and Attorney's Persepective
  10. What Happened: a medical perspective
  11. Acceptance and Letting Go Of What You Wanted: Hospice and Loving Goodbyes

Visiting The Nursing Home:

Now that your loved one is in a skilled nursing facility or if you have the dough, a private long-term care home (some can be as small and charming as 5 patients per house) your roll shifts from warrior to advocate.

The nursing home I had to "dupe" into taking Paul, now needed to be my partner and Paul's caregiver. I had cool out and learn how to find the good in the place that was Paul's new home and find out who, amongst the employees would be my helpers. There were nurses that were very kind hearted and that helped a lot.

Even with some helpers you'll need to go in on a regular basis to make sure your loved one is being cared for properly. It really takes some time and energy and I found the noisy bells and whistles of the nursing home and the disoriented sounds of untended to patients an emotional challenge. Sometimes we'd take Paul out for drives or bring him back to our apartment just to get away from the noise aspect. Or we'd go out to the patio and throw a big red ball back and forth with him.

Here is a list of things to bare in mind if your loved one begins to live in a nursing facility: 

1. Make sure their is an official list of everything your loved one owns/has a the facility so when something is lost (and it will be) you can hold them accountable. 

Paul was blind without his glasses and they were lost frequently, usually be left in the dining hall or in trousers taken to the laundry. We had several sets of expensive hearing aids lost and the nursing home paid for them twice, then warned me they wouldn't buy them again, so I kept them at home for our visits with him.

2. Be a squeaky wheel; if something doesn't seem right get someone's attention

When the nursing home called me this past January to tell me Paul wasn't looking too good and they were ordering tests to see if he had a urinary tract infection, I went in to see what he looked like to me.  I was aghast, I had been in to be with him the week before and since then he'd tanked heath-wise so much, he appeared to be dying. I told the head nurse (who was new), I think he's dying and I think he is dehydrated. She said he wouldn't drink but he should be okay through the weekend and the tests would be on Monday. I insisted he be tested for dehydration today. It took them 11 hours to get the results and it turned out he was severely dehydrated. Paul was immediately sent to the ER and put in ICU with a mega-rehydration drip. The doctor said Paul's body was like a man that had been found on a desert island, with no water and that he probably wouldn't have made it through another day.

3. Teeth and other "nonessentials"

Ever wondered why basic health care doesn't cover teeth. I have. When I was up in Portland, OR a few years ago I saw a Kaiser office with the words "Medical and Dental" on the door. Weren't they the same thing? At least Portland Kaiser covers teeth. But skilled nursing homes don't really cover that. I was able to make the case that Paul was in urgent shape with his teeth all falling out at once and they offered to get him x-rays, I drove him there and brought him back. Yep his teeth were breaking off and falling out. This was because the nursing home was not brushing his teeth, nor anyone else's...

The teeth issue, losing them for no reason other than neglect, was just about the worse disgrace and dishonor to a human being in a first world country I can think of. It was tragic.

I blamed myself for not being there day after day to brush his teeth, but wasn't this what the nursing home was getting paid $5000 a month for? Just like the loss of Paul's glasses, (the pair he'd had when he came in went away into the unknown), something that defined who he was and how he looked, the teeth were the final straw, a last indignity to ones personal corporeal representation in the world.

4. Make nice when and where you can

When Paul's teeth began to bleed and break I had a care meeting with the staff. I was really angry and  I wanted someone to blame and yell at. But where would that get me? If I polarize my relationship with the staff they won't want to be my partner and Paul's care will suffer even more. So I brought in a box of See's Candies and we passed it around and giggled for a minute about chocolate. We still had to talk about the hard stuff, but this started the meeting out in a positive way. Plus, the sugar helped my mood.

5. Remember most of the staff is making little above minimum wage and they are over worked

6. Remember to Breathe and keep a sense of humor

Ray Mungo, Kurt Vonnegut, Paul

CLB and Paul Science Fiction World Con 1993

Just out of Rehab-July 1995

1996 Lecture on Dylan's Rolling Thunder Revue for Dylan Fest Austria

Guest of honor at Castle Plankenstein Austria 1996

Pauls friend and German agent Dieter 1999


2002 with Alexander

Home for a few hours but living in a nursing home 2009

One of the remaining joys, throwing a ball back and forth, Paul and Larry Greenfield 2010
Playing solitaire 2011

Home for a few hours 2011

Paul's last birthday May 19, 2012

January 2012

January 2013, a week before the severe dehydration

Family visiting Paul while he is in hospice care


  1. Though we let them stay in a nursing home, our elderly feels delighted when we visit them. Spend time with them every weekend. Don't let them feel alone and abandoned. It feels good to know that they are being taken care of, but it feels a lot better to know that they are remembered. :)

  2. family caregiversCaregiver Space. The work we do at The Caregiver Space stems from our commitment to ensuring caregivers feel seen, heard and most of all supported.