Friday, October 17, 2014

Facility Fears Part 2: Being Prepared.


This is part 2 of my previous blog. At some point this summer, a news story circulated on Facebook and also Yahoo, and probably other sites, about a family whose elderly mother had died because of suspected nursing home neglect.

Her son was the predominant speaker, and he described his mother in glowing terms. She had lived with them for years, apparently, and they had been proud to care for her. It didn’t sound like she had dementia, just the expected health problems for someone her age. As often happens, there was an accident, she was taken to the hospital, and the family had to quickly find a nursing home/rehab facility for her. Within a few weeks, as I recall, this otherwise healthy elderly woman was dead – from suspected neglect.

Of course, this caught my attention, and I felt terrible for the family. This is something all of us who have loved ones in facilities hate to hear, and fear will happen to our care receivers. What could possibly be worse? But something the gentleman said caught my attention in particular, and reminded me about an issue I talk about often – something I tell every single caregiver, and potential caregiver, I talk to. It’s about preparation.

The gentleman said that his mother’s accident happened suddenly, and that they only had 24 hours to find a nursing home for her. While I sympathize with their plight, I also think they could have planned ahead. Apparently, their mother lived with them for several years, as she aged and her health declined. Knowing that she was aging, couldn’t they have started investigating facilities and resources in their area as a proactive response to a definite possibility of accident of injury?

When I started caring for Dad, I knew absolutely nothing. Suddenly, we were faced with the need to find either in-home care for Dad or a facility – immediately! Where to begin? Fortunately, we had a care manager helping us and she found an in-home care agency, but again, we were very fortunate in that choice. If we’d found them on our own, they could have turned out to be not such a good agency, and we wouldn’t have known that until it was too late.

I definitely didn’t want to go through that again. Wanting to be proactive as Dad’s health declined, I started looking for a facility well before he had to go into one. That way I was able to really do my research and find the right place, without feeling rushed.

When I speak to people now who talk about their loved one still being in denial, I tell them to just start doing research on their own! Find a lawyer now, find a facility, locate resources – that way you’ll have them when the worst happens, as it did for me, and for this family. I am so sorry it happened to them, but perhaps some good can come out of it, if it helps convince a family that they need to start planning ahead for their loved one, before the worst happens.

Tuesday, October 7, 2014

Facility Fears.

We were sitting on the couch a few weeks ago watching TV and an ad came on for the eleven o’clock news. They were promo-ing a story about abuse in an adult family home (film at eleven!) complete with deep-voiced announcer warnings, quickly cut editing, and a short cut of a grieving widow.  It is only the latest of the media stories I’ve seen about dangerous facilities and abuse of our elderly and I find it so frustrating.  Not because I don’t think these problems, and many more, don’t need to be out there, in the public eye, growing awareness – because I do. 

I find it frustrating for two reasons: because we just see the problems, and nobody proposes any kind of fix or solution; it seems to be fear-mongering of the worst sort since we rarely hear about good facilities, and it can make a difficult choice even more wrenching.  It can be so difficult to make the decision to place your loved one in a facility; weathering your own guilt, the opinions and judgments of others, and the feelings of your loved one.  People tend to want us to believe that home care is the best and only option, which just isn’t true for many people.  I physically could not care for my father, and so placing him in a home with good care was my only option.  Even if I could have cared for him, I probably would have placed him anyway because there were things I didn’t want to do or see happen to him.

The next difficult part is finding a good place, out of the thousands that are out there.  I wonder every day of my life whether Dad is okay, or being treated right, or that small cut on his hand is from his fingernails or because of a caregiver.  In the end, I have to trust that I picked the right place, even while keeping an eye out and making sure their government rating is still good.  We must trust our instincts, our senses, other people, and our government in order to pick the right home for our loved ones.  Unfortunately, any or all of those things can be wrong or fooled, and sometimes the wrong place gets picked, and people get hurt.  Of course, this is sad.  But we are not psychic, we don’t know everything, and sometimes you just have to hope for the best and prepare for the worst.

While these stories tell us what to look out for, which is good, they may also paralyze people and make it difficult to choose a facility.  A few months ago, there was a Frontline story about a Seattle-based company that ran Assisted Living Facilities.  It exposed the numerous counts of abuse, wandering, resident death, and employee abuse that this company was responsible for.  It also included an interview of the CEO who strove mightily to absolve his company and managers from fault, although you could see his panic.  Families told stories of loved ones that disappeared, were hurt, or died and said if they’d only known the company’s history, they wouldn’t have chosen it.  Once again, good to have the warning out there about this particular company, but no balancing representation of the good companies. 

(Ironically, after I watched this story, I drove past the Assisted Living facility where Dad used to live; a bright, lovely facility where he got good care.  I saw on the sign that they had been bought out by the very company featured on Frontline and I had to laugh.  If I had left Dad there, would he have been subject to the same dangers as on the program?)

I think what I’m actually trying to say is that these stories are important and they need to be told.  These terrible caregivers and facilities need to be outed so that we can get better accountability and government oversight.  But I would also love to see some stories about good facilities and caregivers so families don’t feel there are no good choices or that they will be abandoning their loved one to the worst kind of hell, when in fact, there are great facilities out there.  Show us what to look for and how to look – show us what a good place looks like.  And finally, give us a fix, give us some options.  If facilities are bad and we can’t care for our loved ones at home, what should we do?  Don’t just show us the problems – show us some solutions.






 

 

Monday, September 29, 2014

Positive Grief Experience.

It's been pointed out to me that I have my dates wrong.  The group starts tomorrow the 7th.  I apologize for the error.


To all my local readers, I'll be co-facilitating a six-week, Growing through Grief Group with a good friend at Providence Hospice's Grief Support program. Ross, who is facilitating, is the most down-to-earth, compassionate, funny individual, and he runs a great group. I've facilitated these groups before and they can be so positive for people who are dealing, or trying to deal, with a loss in the last year - or even last few years.

As we all know, grief can be handily pushed down, ignored, and subsumed "until I have more time to deal with it," leaving a lot of grief un-grieved. When there is a new loss, of any kind, big or small, the unexamined grief from the past can resurface, sometimes violently, leaving people exhausted, strung-out, bereaved, and wondering what the hell is happening.That is why a group like this can be so good because it helps support us through this difficult process.

During the group, we will tell our stories, learn techniques for grieving, and experience new possibilities for what life - post loved-one - can look like. If you feel like this might be for you, I urge you to call 206.749.6602 and speak to someone there who can get you signed up. The group is starting next Tuesday, the 10th, at 1:00, and will continue for six weeks until November 18th, skipping the 28th.

Thursday, September 25, 2014

Energy Exchange Continued.

Here's a great follow up to my recent blog about getting paid as a family caregiver, posted by the lovely folks at The Caregiver Space blog. It has some really great links and suggestions about how to get paid as a caregiver, as well as resources to possibly achieve this.

It is a dirty little secret that we family caregivers are saving private insurance companies, Medicare and Medicaid, and the Government millions of dollars that they would have to shell out in care of our loved ones if we weren't shouldering the load! There are several European countries, as well as Australia, who have mandated pay for family caregivers, as well as including their medical coverage, in the benefits provided to the care receiver.

It is in these organizations best interest to promote a stigma against asking for fair pay for a job, even if it is taking care of a loved one. The more caregivers feel guilty or as if they need to "do the right thing", the less chance that insurance and Medicare will have to pay out. There are few people in this world who would agree to a job that doesn't pay anything, and no employer would expect them to, yet caregivers fall into a special category. A category that we don't want to be a part of. Caregivers are performing a huge, draining job, and they should receive something for it.

If you are receiving a guilt trip from other individuals or family members who expect you to gladly give up precious time and energy in caring for your loved one - inform them that this is one trip you won't be going on! Nobody should have to go without, drain their savings, and drain themselves to provide care for someone who needs it.


http://thecaregiverspace.org/blog/paid-family-caregiver/

Sunday, September 14, 2014

How Inspiring!




I am so honored to have been nominated by a fellow blogger for a 'Very Inspiring Blogger Award"! I had noticed this award going around and was hoping my blog makes enough of an impact to be noticed and I'm grateful to Sandra Ross from, http://goinggentleintothatgoodnight.com/, for her nomination. It just means so much to have people know you've been heard and noticed; it makes what I'm doing even more worthwhile!

The rules of the game are;
  1. Thanking and linking to the person who nominated you.
  2. Listing the rules and displaying the award.
  3. Telling seven facts about yourself.
  4. Nominate 15 other bloggers and comment on their posts that they have been nominated (this will be a hard one because a lot of the great blogs I follow have already been nominated!)
  5. Display the award proudly and follow the blog that nominated you.
The blogs I nominate are:

http://momsbrain.wordpress.com/   By the lovely writer Emily Caldwell.

www.rheumatoidarthritisguy.com   RA Guy has done a huge amount to spread awareness, understanding, and support about RA.

http://www.thieflewybodydementia.com/   Kathy Lowrey writes an amazing blog, and has now started a second one about life after caregiving.

http://mydementedmom.com/  Kathy Ritchie writes a lovely blog and is doing so much to spread the word about dementia.

http://earlyonset.blogspot.com/  Linda Fisher works tirelessly to advocate for caregivers and dementia sufferers.

http://www.robertssister.com/   Because not all caregiving is about dementia. Trish Hughes Kreis' great blog.

http://incurable-insomniac.blogspot.com/  SK Waller writes beautifully, especially about her health concerns and living with a chronic illness.

http://lewybodydementia.blogspot.com/  The Whitworths' work so hard to advocate for caregivers and those with LBD.

http://emuf.blogspot.com/  I just like Emily's blog!

http://twosocksonefoot.wordpress.com/  I really enjoy Beverly Johnson's blog and her writing.

http://gettingclosertomyself.blogspot.com/  Leslie writes beautifully about living with a chronic illness.

http://confessionsof1caregiver.blogspot.com/  I don't know much about the blog's author but I really like her pithy stories and her spirit.

Some of these blogs may already have been nominated, so they'll really know they are doing something right! I've also included blogs about living with chronic illness, because that's a big part of my life.

Seven facts about me:
  1. I love dahlias and I grow them in containers in my garden.
  2. I am a mixed media artist, working with fabric, quilting, found objects, paper, and leather. I especially love old keys and feathers!
  3. I got married on Kauai where someday, my husband and I hope to have a vacation condo.
  4. I became a caregiver at 33 and had no idea what I was doing but I'm really glad I took on the challenge.
  5. I read, a lot! Mostly present-day fiction, memoirs, and creative non-fiction.
  6. I am currently teaching my step-daughter how to drive, which is quite the adventure.
  7. I love doing hospice work, working with families, and facilitating grief groups for those who've lost loved ones. It is the greatest honor to work with those at end-of-life, and those who are bereaved.
Thank you again, and please visit the blogs I've linked to!

Monday, September 8, 2014

Surgery - Yes or No?

There was a post on Alzheimer's Reading Room, the best clearing-house for dementia and caregiver information currently, about anesthesia and it's effects on dementia. Below is a link to their list of articles and other information about this important topic. Too many caregivers and loved ones of dementia sufferers don't yet know the dangers of anesthesia to those with dementia.

It can cause a worsening of cognitive dysfunction; physical paralysis, muscle contracture, and other problems; and increased delirium and confusion. These effects are particularly bad in those with Lewy Body dementia.

Even though I knew Dad had Lewy Body dementia, I wasn't aware of the risks of anesthesia. I authorized a surgery for a double hernia, which I probably didn't have much choice about, but which I would have considered even more carefully had a known about anesthesia and dementia. After the surgery, I noticed a marked drop in his mental presence, facial affect, and cognitive abilities. I only found out a year or so later that the anesthesia had probably worsened his LBD symptoms.

When my caregivers ask whether they should authorize a particular operation or procedure for their loved ones with dementia, I always inform them of the risks, tell them to talk to the physician and research other options, and decide whether the procedure is really necessary.

Check out the link below for more great information.

http://www.google.com/cse?cx=003431791898687910529:WMX1763778196&q=Anesthesia&oq=Anesthesia&gs_l=partner.12..0l2.2740.2740.0.6186.1.1.0.0.0.0.79.79.1.1.0.gsnos%2Cn%3D13...0.80j6400j2..1ac.1.25.partner..0.1.79.t3tl-vP5y7Q#gsc.tab=0&gsc.q=Anesthesia&gsc.page=1

Thursday, September 4, 2014

What's Your Orientation?

This is a subject that comes up often in caregiving discussions, thank goodness! The question of whether you should re-orient your loved one if they get confused about where, or when, they are. I saw the essay I've linked to below and it reminded me of what I used to do with Dad and how important it is to keep talking about this, even though practices have changed a lot in the last ten years.

When I started caring for Dad, the prevailing wisdom was to continually remind your loved one with dementia about who they were, where they were, what year it was, and that the people they might be talking about having just seen had, in fact, been dead for forty years. It was called 'reality orientation' and it meant that family members and facility staff corrected people with dementia all the time. Even before I knew anything about dementia, and how you should treat people with it, it seemed like the cruelest thing in the world to keep making them even more confused and anxious by forcing to think or remember a certain way.

Years ago, I watched my aunt and my father deal with my grandmother, who had vascular dementia. My aunt insisted that what my grandmother said was wrong, that the people she was talking about were dead, that is was a different year from the one my grandmother thought it was, etc. I knew nothing about dementia, but this seemed so pointless and mean to me. Who cared where she thought she was, or who she thought she was talking to? When I took over for Dad, I decided early on that I was going to go along with whatever he said or did.

And I did, and it was fine. He would tell me wild stories about having been on his sailboat on Lake Washington during a huge storm that trashed the boat, and how lucky he'd been to stay alive. I knew the boat had gotten loose in the wind five years before and crashed into a dock, but I didn't remind him of that. He told me that my mother had died while giving birth to my sister, who was too big (I think he was thinking of her as a full-grown adult), and I just listened. I don't think he ever mistook me for someone else, but then he kept a lot of what he was experiencing to himself, so I don't know how he saw me. I do know that it kept him relaxed and unstressed that I didn't try to make him think something he couldn't, and I got to hear some interesting stories!

Now we know that people with dementia are unable to make current memories - snapshots, if you will, of what is happening in the present. All they have are snapshots from the past, and a lot of empty pages in the present. Lacking these recent snapshots, they try to make sense of current events and people using old memories. So a waiting room might look like the airport they used to fly into as a pilot. Or they think a caregiver who they see all the time and who cares for them intimately is their mother. Seems logical to me.

Dad and I are past the point where he's even talking, let alone mistaking me for his mother or thinking that he's somewhere, or somewhen, else. I no longer know what is going on in his mind or what he is thinking or feeling. I'm proud of how I dealt with his dementia, though, and that I made his life as comfortable and enjoyable as possible - largely by trying not to remind him he had dementia!

I'm so glad that practices have changed in the last few years and that good people have studied dementia and what it is doing to the brain and behaviors. Wonderful people are developing new techniques to deal with those with dementia in a compassionate and low-stress way. I tell all my caregivers not to try to keep their loved ones in "reality" because what is reality after all? Reality should be a relaxed, non-stressed care receiver!

http://www.alzheimersreadingroom.com/2014/09/how-reorienting-dementia-patient-can-be.html

Learning to Speak Alzheimer's. Joanne Koenig Coste
Contented Dementia. Oliver James