Friday, October 24, 2014

When It Is Time to Move.

Here is another great post from The Caregiver Space about transitioning to facility care! They have asked caregivers for tips and suggestions on how to move their loved ones and make them comfortable in their new homes, and they are all great!

http://thecaregiverspace.org/blog/transition-nursing-home/

I've written about this before but here are a few things I did when it came time for a facility.

When I decided to move Dad, I made sure I did it while he was still somewhat lucid and able to recognize, and become familiar, with his new home. Before he even moved, the facility had me fill out a document answering many, many questions about Dad. Where he had worked, who he had been married to, where he had lived, what he liked to eat, and what he loved to do. This was intended to help his caregivers learn about him and give them information about him so they could help him be comfortable and understood. I think its a great idea and would wonder why any facility wouldn't suggest it.

I was actually able to find an apartment that was similar to the layout of his bedroom, which I think helped him become accustomed to it. I stocked the apartment with food that he liked and some comfortable furniture, and I planned to bring his favorite and most familiar furniture, books, pictures, and objects on moving day so he could feel at home. His headboard and chest of drawers, a print that had been in my parent's living room forever, a wall clock that had been in the kitchen as long as I could remember. Little touches that a lot of the time you don't even notice anymore but that soothe the eye and the brain.

We were also able to bring his beloved cat to the facility, which I knew would help Dad immensely. Finding a facility that allows pets is a great idea. Even if your loved one doesn't have one, the facility probably will, and animals have been shown to have a physically calming effect.

I did tell Dad he'd be moving, but it generated anxiety and anger in him, so I ended up moving him secretly. I packed up his room over two days, while keeping him out of the house, but made sure that he couldn't tell his room had changed. The second day, we moved everything over to his new apartment and made sure it was unpacked and comfortable before having his aide bring him there for dinner. We all had dinner together in the facility dining room and then took Dad up to introduce him to his new place. Sneaky, yes. Absolutely essential? Again, yes. It really depends on your loved one, how much they can be involved in the potential move. If they are okay with it, try to include them in a few of the decisions.

At the beginning, Del, his good friend and aide, stayed with him for a few days, in the apartment so he would have a familiar face around. I made sure to visit him a day or so after the move so he would also know he hadn't been abandoned in this new place. After the initial move in, I arranged for private aides, including myself, to be with Dad almost every day; going out for walks or lunch or to church on Sundays. If you can, and as your loved one's disease allows, arrange for visits from family and friends as often as possible so that your loved one still feels loved and part of a community. It will also show the staff that this is someone who has people watching out for them - concerned for their well-being.

A move away from familiar and loved surroundings is never an easy thing, but it is often necessary and the best choice for everyone. It can be done in a loving and mindful manner. Read the above post for tips on how to do it in a way that works for everyone - care receiver AND caregiver!

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