Is Your Loved One In Long-Term-Care?

Cleaning up paperwork on my desk, I ran into notes and information that I thought instead of filing away, I could share on my blog hoping that some of it might be useful for anyone having their loved one in a long-term-care facility.

I spent a year as an Ombudsman for the State of Oregon until my mother required my full-time presence if she was to stay at home with us. I am grateful to the State of Oregon for my experience and training. I encourage others to seek out this opportunity as a way of possibly helping our residents of long-term-care for the better and maybe help you personally in years to surely come way before you are ready! I can speak from experience of both having my mother in long-term-care for a year; along with my Ombudsman experience and now as a caregiver myself.

I found scribbled on a yellow note pad some notes that I must have written down during one of frequent training meetings while serving the state as a volunteer regarding meetings for a Care Plan or maintenance of a Care Plan.

When you have a loved one in long-term-care, you should consider yourself their best and strongest advocate to make sure their care is top notch along with protecting their rights. One cannot assume that care facilities have an interest in following the best laid plans for care. They often find themselves short staffed, unwilling to train help to high expectations and/or simply in the business of making money without willing to spend money or time improving and making life and health a top priority for their residents.

When my mother was in a local facility, I found that I could not assume that she was being well cared for. I wrote an article at the time so that I would not forget what she and I experienced. Reading this over, I find myself still angry about her care. I cared. I asked questions and I persisted and still with little or no improvement. I ended up taking her home. My article written in 2008, speaks volumes describing my frustration and my mother's lack of proper care with little dignity.

Back to the yellow pad notes:

Making sure you have the legal rights to sit in on a Care Plan Meeting and to look over facility medical notes either by a Power of Attorney or Guardianship and possibly a note from the resident saying you have this right, attend a meeting of her caregivers in the facility where they are a resident.

• You can state that you are there to act as your resident's advocate. Keep it informal as you can telling them that you have written permission or rights to access medical records prepared to show them your permission.




• When you look at the nurses notes, look for problem notes from day 1 and if there are missing dates with nothing written. If nothing written ask for the shift log. Remember getting nasty will not get you what you are looking for.




• The Care Plan should not have omissions and inconsistencies.




• Flow Sheets will see what portion of each meal is eaten by your loved one or possibly tracking diabetes issues. Keep in mind that I have had caregivers in facilities report to me that they have been asked to fudge on these reports by reporting a shower given even when they did not shower the resident. Imagine one worker showering 17 residents. Common sense says that this is nearly impossible especially in a Memory Care Unit where full assist is needed.

You might be very disappointed knowing the records could be incomplete or just plain wrong showing you the need for an advocate.

• Now, you have the added task of feeling the hair of the resident. Is it oily? Does it smell bad? Keep a log for yourself on what you experience. Are their clothing soiled. Is it even their own clothing?




• Can you smell urine when you walk into a unit? If you can, what else is not being taken care of?

I took an inventory of what my mother brought into the facility and actually took pictures of each and every item. It is amazing to see what is mixed up. I even insisted on washing my mother's clothes hoping to keep this problem at bay. It did not work. Clothes would show up and clothes would go away.

• Does your loved one have a hearing aid or glasses and false teeth? Note this on her entry forms. Keep a copy for yourself with signatures. The facility is libel to replace lost items. It is hard to convince anyone that she lost what they don't have written down.

We should be irritated and even angry that we have to do all this when we are paying 4-10 thousand dollars a month to house our loved ones in a facility. Keep those notes. Call your local Ombudsman when you have any problems and attend any support meetings the facility has for residents and family. We cannot expect improvements if we do not participate as an advocate watching out for those we love and care for.

Now, is your loved one even wearing the hearing aid or the glasses? Is someone helping them see and hear? My mother was left in silence most of the time.

As disjointed this blog is today, I am hopeful that it will help someone that has someone in long-term-care or is thinking that it will be necessary sooner than later. Feel free to give comments and/or ask questions.

Staying Aware Regarding Long Term Care

In Long-Term Care every residents has the following rights:

• Quarterly Care Plan
• Medical information on their condition
• Visitors of choice
• Nurse 24 hour service in Nursing Homes
• Service Plan
• Financial billing information
• Level of function maintained or better

I think we often think that residents of Long-Term Care do not have rights. We place them in a Residential Care Facility because they are not safe living at home or we can't give them the care they need at home. We sometimes think we can keep Aunt Alice from visiting because she may upset the resident only to realize that Aunt Alice is very important for the resident to visit with. She was part of their normal life before being placed in Long-Term Care. It is the resident's right to choose who they visit with not ours.

We make decisions about medical information not considering that the patient has the right to know what is going on. We sell their home, pack up their treasures to pay for the cost of Long-Term Care without consulting with the loved one. We don't want to bother them with such tedious details, but they have a right to know how much the facility is billing them and where the money is coming from to pay the bills.

We can't assume that lying prone in bed is the future for our loved one. They may require physical therapy to be able to sit up again. It is important that everything is done to help them regain their health to the best of our ability. Sure, people don't always get better and they may even die, but just sitting there waiting for death is not an option in most cases.

I am amazed how little we expect from Long-Term Care facilities just because we are ignorant of the rules and regulations that govern these facilities. We assume because it is much easier than learning these regulations so that we can be an advocate for our loved one that is placed in such a facility.

I learned the hard way when I ignorantly placed my mother in a Long-Term Facility. I assumed they had her best interest in their hearts. The heart ended up being translated into the financial gain they could realize from my mother if they kept her at the lowest of all expectations. If one needs full assist on anything, it means the institution makes more money than partial assist or no assist. I found her being drugged into "full assist" as it is hard to do much when you are made into being unable to do the easiest of task, because you simply cannot wrap your mind around much when you are drugged.

I was frustrated feeling in my gut that all was not as I wished. I started asking questions and learning more. Needless to say, my mother now lives with me in our home. I took all her mind altering drugs from her and she came back to mostly only partial assist or no assist on her latest evaluation.

We can't assume. Be active in the lives of those we have in Long-Term Care. Like our children in grade school, you will find more satisfaction the more you are involved. You will know what is going on. You may be pleased at what you find out as there are many very fine facilities, but for every good facility, there is one that is in it simply to make money taking shortcuts to realize the highest profit. One of the facilities I am aware of spends $1.14 per resident per day on food. Can you imagine what these meals must consist of or do not consist of!

If you ask for the State Survey from a Long-Term Care facility, they are obligated to show it to you. It will show you what the latest state survey team found when they investigated the business. Take a look. You might find an infraction of a nurse not being on duty for 24 hours in a Nursing Home; which is against the rules. You might find feeding tubes not being implemented as to the regulations. Most often is the fact that call lights are not responded to forcing someone to wet their beds. How humiliating this has to be! Be an advocate for your loved one placed in Long-Term Care. They need your love and your support. Look on the bulletin board to see a flyer giving the name and the number for the State Certified Ombudsman assigned to the facility. Call her/him. Get to know just how they can help you be the advocate you must be.

Long Term Care Ombudsman Musings

June started off with presenting my information on Culture Change in Long Term Care at our local Care Connection Meeting headed up by Liz Cohen. I was surprised to see how many showed up and the way they seemed to eat up the information! It was a lively meeting with many comments by the audience. I love it when I can see sparks flying through a group knowing that they won't soon forget some of what I find worth sharing.

I have been energized by that Ombudsman weekend in Portland. My next step is to share my workshop on abuse in long term care. Abuse is such a gray issue. Sometimes I find myself not sure whether something should be reported or not. When in question, report. That gives the question to those much more qualified to decide whether abuse has taken place. I will share this next presentation once I get it typed up here on my blog.

We have a new Long Term Care facility here in Brookings, Oregon community. Sea View is like entering a fine hotel with a huge gathering place immediately upon crossing the front door. There are always groups of people at the many tables. Some are investigating whether or not to take up residency and some are residents enjoying getting together over lunch or listening to a talk or performance that has been brought in.

My friend Elmo Williams told me yesterday that he had given a talk there. Elmo is someone who recognizes good food and his report on the food was heartening. I find that I often do not even recognize what residents are being served in some facilities and here the food is presented as if it were a nice restaurant. I hope in a year or two I won't witness the food becoming much the same as anywhere else. I would love the cooks in all Long Term Care facilities to go to Sea View for lunch to see what is possible.

As an Ombudsman I need to stay objective. I will stay alert and not assume that all is perfect just because the food and facility is pretty!

Chetco Inn, a Residential Care Facility, is having a pot luck today. I've been invited to bring my mother. I think we will swing by as I hear it is always a good time. I like to see my residents having a good time.

The least favorite thing about being a Certified Ombudsman is writing up the reports. I find if I keep a running commentary on my computer with dates and times, I can assess whether a report should be written up along with notes about my residents helps me remember them and special information to help me serve them better. I feel good getting to know everyone better the more experience I have.

While I was at Sea View the other day, I sat in Memory Care with a resident sharing a cup of coffee and just chatting mostly about what she wanted to talk about. I feel I know her in a personal way. If I saw her at the grocery store, I would now feel she was like a neighbor eager to greet her and even give her a sincere hug. I'd like to have relationships like that with each and every resident I represent.

I have a male resident at one of my facilities that initially pretty well told me where I could go in no uncertain terms. Through meeting with him several times now, I feel he now even likes me and I have learned to like him. I think I might be a bit testy if I had lost my ability to communicate effectively and was stuck in a wheel chair somewhere I didn't really want to be. It is always good to put myself in their shoes before I go off thinking they don't deserve my attention.

I am sharing this stuff on my blog in a casual manner using no names or private information so that you out there bothering to read this might just spend some of your time being a friend for someone in long term care. Everyone deserves a best friend to off load on or just share with. Wouldn't it be special if each long term care resident had a "best friend"? The sad truth is many of them have no family, no friends and find themselves staring at the walls wondering why life ended up like it has. Now, some are still very much involved with life making the best of their situation and maybe even choosing to be where they are. Not all are suffering, but many are. I see dull eyes, lack of interest in much while hating the food, resenting sitting for way too many hours with nothing to do that interest them and missing their former lives. As human beings I feel we have a mission to make life better for those in need. I hope you find yourself motivated to stop by your local "old age home" to volunteer. Thanks for doing this! We never know if we will be one of them any day now.

Culture Change Movement in Long Term Care

I recently attended a meeting in Portland, OR, regarding long term care as an Oregon State Certified Ombudsman for Long Term Care. There is a movement in long term care to make long term care change from just caring for a resident into having the resident experience life much like they did before being forced into having others care for them. Residents haven't changed from who they were all their lives just because they are now living in an "institution". This movement addresses residents as individuals instead of the usual group getting all the same food, activities, care and environment. Here are some of the ideas I heard as suggestions for making this change for residents of long term care.


Life story questionnaire is a way to get to know each resident about their lives before long term care. How did they spend their day? What was their joy?

* Favorite music
* Favorite meals
* What did they see all day at home?
* did they have house cats?
* Were there live plants in their homes?
* did they enjoy a fish tank?

Some of the best practices to make a day better for long-term-care residents is to remember:

* Patience is needed
* Make repetitive - repeating is really O.K.
* Answer as first time you have been asked the question. Keep it fresh
* Jokes in morning set mood for the day
* Agitation spreads so defuse it before it goes further
* Validate even senseless. Everyone needs to be validated no matter what else is going on.
* Coloring outside the lines just fine as perfection is not really that important

Games:

* O’ho
* Roll dice to spots
* Trivia
* Songs
* Life style stories
* Grab bag poetry
* Good news stories

Activities:

* Garden time
* Walks
* Bible study
* Pet therapy
* Interact with music
* Laughing Yoga

Restorative Activities

* Blend home in the institution.
* Therapeutic needs
* Entertaining
* Meaningful fun that suits residents
* Geared for options and abilities
* Create what they want
* Know what builds their soul
* Life enrichment Dept.: Laughter, fun and interacting with purpose


Other things that can make life like it was before someone had to be a resident of a facility

* Choice as to when residents get up i.e.: 7:30-9:30
* Buffet style meals instead of trays
* Consistent staffing with staff meetings sharing ideas in a learning circle
* I also read that having a staff member be assigned to a resident as a "best friend" can make life have more meaning. We all need a best friend even when old and sick.

Small group activities that:

* Engage
* Innovative
* Inspire

Here are some fun activities that bring smiles and a sense of what life was before being in long-term-care

* Pie eating contest
* Dog shows
* Brewing beer
* Wine tasting
* Pajama day for staff
* Make dog biscuits
* Have car washes
* Husk corn
* Make salads
* Make pies

* Have evening activities. Not everyone wants to just sit in front of the TV or go to bed. Older adults do have social lives and activities after dark when they are home. They should also have this pleasure in long term care.

Volunteers need purpose to keep them, so don't give them silly meaningless activities. I have volunteered often where I know if I were to stop tomorrow, no one would even miss me. Make the volunteer an important member of the team and they will stay.

Have more moments

* On the day of each resident's birthday have the resident have their own gift and their own cake. In "real" life we don't have a group birthday cake at the beginning of the month. We wake up to the joy of our own special day. Residents of long term care deserve the same.

We all need something to:

* To do
* To care for
* Care about
* To love
* To hope for

In Foster Homes some of the activities could be:

* Real life activities like polishing the silver, combing the dog etc
* Scrabble
* Cooking fun where "usual" life returns
* Copy what we do at our homes like making a bed, feeding the bird and more
* Ask residents what they like and incorporate those likes into their lives

Trying to Find Retirement in Brookings, Oregon

I've closed my website for Winchuck River Store, pulled out of a local shop where I was selling and compromised by placing my items in an antique mall where working time is minimal. I can now spend more time with mom, work in my garden and enjoy our home near Brookings, Oregon.

The reason for all of this movement or lack of movement is that I brought my mother home from Long-Term-Care. She was on 5 mind altering drugs. I had lost all trust that she was taken care of in a dignified and even sound medically manner. I am now responsible for the care of my mother. I have hired a friend to watch over her when I need to leave; which is working out very well.

My mother's "sitter" loves to chatter and mom loves her for chattering. What a union made in Heaven! Taking all but one mind altering drug away from mom has restored her memory and level of function. She is no longer in need of "memory care"!

I have become a Ombudsman for the state of Oregon as a result of my frustration and need to learn all that I could about long term care. I am glad that I have had the experience I did with mom, as it makes me more alert to potential problems in long term care. I do not assume that all is well. I'm more likely to say...hmmmm...what is really going on here? I'm here for anyone who may be searching for answers to any long term care problems. If I cannot personally help, I do have some sources that possibly could.

We lost two of our labs to illness and old age this past year. In late December, we found a girl in need hanging out in Gold Beach at the dog shelter. Marley, a Wired Hair Pointing Griffon, is now just 2 and beginning to simmer down. Her previous family apparently spent a fortune on her (her breed runs 1K or more), didn't socialize her or train her and gave up after 1.5 years. I imagine she was stuck in a small backyard alone and ate it for something to do and chewed on their smaller dog! She was very aggressive with our other dog, Maggie, which shows her lack of socialization let alone good manners. I rushed to learn all I could about getting rid of anyone's need to eat another living being. Maggie was also guilty of wanting to rid the world of Marley's presence. I rushed to get on Cesar's website, read other internet information and bought two books one on dog body language and one on aggression. It paid off, with two girls that actually play together and enjoy a run in the woods together. I got the help of my husband and the two of us did not let a side glance go unattended to. We were on those dogs like glue for well over a month...and then to less than glue and more relaxed even today! We both agree that the trick was also to walk and run those dogs together each and every day to get them bonded into our cohesive pack with us as the leaders. What power! I am a pack leader!!

Brenda Atwood's great book, Aggression in Dogs, which saved us from death on the Winchuck, can be found on Amazon.Com. I found much of what she wrote in her body language book repeated in Aggression in Dogs. I've learned to speak "dog" . It actually works to go into their world to communicate in a way that is very clear and not a bunch of run on sentences in our "foreign" human language hoping they get the meaning. I've learned to lick my lips and yawn to help a stressed girl relax a bit. I'm not yet sniffing butts and scratching my behind! LOL

and now that I am back on the blog, I will make an effort to update more frequently with what is going on in and around our world here on the Wild River's Coast of Southern Oregon.