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November 2013
In this issue: Caring for a Veteran, When home isn't enough, Practical Solutions follow up, ALS Forum draws a roomful of students
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Caring for a Veteran - A story for Caregiver's Month and Veteran's Day
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by Caryn Wise
Last year this time, Mike Driscoll was noticing he felt his words were slurring. Friends and family, even his wife Linda did not notice but Mike knew something was going on. The neurologist’s tests came back negative and it was determined the best course of action would be to wait and see. They were told to come back in six months unless otherwise indicated. One month later, Linda was also noticing the slurring and now Mike was having difficulty swallowing at times. They made another appointment. The
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| Mike in his Army uniform |
EMG confirmed a diagnosis of ALS. Linda remembers the day well. March, 26, 2013.
Linda and Mike have been together for 30 years. Mike is an Army veteran, retired in 1992 after 30 years with the Bremerton Naval Shipyard. Linda talks about how great Mike was as a house husband after he retired. It is easy to see how much they care for each other. That is by far the favorite part of my job. I love seeing how deeply families love each other.
Linda worked at the Bangor Naval Submarine Base and retired in 2000. She then went to work full time as her young grandchildren’s care giver. I think care giving comes naturally for Linda as I watch her kiss her husband and smooth his hair for the picture. She tells me about the journey through devastating hopelessness to anger. Mike was very angry. Linda told him she saw two choices; he could die an angry old man, pushing away his loved ones or he could choose to live and see the beauty in life. She said he changed that very day, not that some days aren’t harder than others. I watch her talk about how impressed she is witnessing the grace with which Mike is living with ALS and it brings tears to her eyes.
Linda tells me of the many surprises with people showing their love for Mike. His golf buddies brought pizza for a poker night. A neighbor they didn’t see often made the beautiful quilt Mike is napping under. The bigger gifts are time with family and friends but communication is increasingly a struggle.
Besides the secret language he and Linda speak, Mike uses an iPad to communicate. It is getting difficult holding the stylus to use the touch screen though. A new Dynavox is on order and they hope to get it soon. Transfers are getting increasingly harder. Mike has fallen again and I am delivering a Hoyer lift to try to fill the gap until the VA order comes through. Being a veteran has some great benefits but the system is slow for someone with this fast progressing disease.
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Cashing in on a Christmas coupon
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Linda wishes for an accessible van. The VA says they don’t qualify for the van grant. She knows it would lift his spirits to get out of the house. She doesn’t want him to feel trapped in their home as well as trapped in his body. They are trying to keep up with the changes and create a beautiful, accessible space on the ground floor that will be safer and more comfortable. The recently remodeled bathroom is the biggest, prettiest bathroom I have ever seen and very accessible.
The VA did approve 20 hours weekly of caregiver support. Duane is a skilled attendant that has a great sense of humor. Linda says,” You have to keep your sense of humor”. She laughs as she jokes with Mike about what in “sickness and in health” doesn’t mean.
Mike had always wanted to walk across the Tacoma Narrows but Linda is afraid of heights. She gave him a coupon for Christmas last year to take that walk.
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When home isn't enough
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The decision to move outside of the home for care can be one of the most agonizing challenges ALS sets in front of us. While many PALS are able to stay in their home with the help of friends and family, often times the needs for care can overwhelm the family unit, and can be a potentially dangerous situation. It normally takes more than one conversation to plan out accommodation for important Life Changes, be patient and allow the discussion to evolve. Stay positive, this is a difficult decision for everyone involved, but If the care needs are eclipsing the primary relationship it may be time to explore Residential care. Residential care is term used to describe a home or facility where an adult can live and get help with care in a community setting. There are many residential care options that have become available over the last several years. Each type of residential care home offers different housing and care options, It is important for you to understand the differences in your residential options and to have a good idea what services are needed. You can then match your needs and preferences with what a particular residential care home offers. Washington State licenses two different types of residential care options that offer more care than in-home caregivers, but less than a Skilled Nursing Facility. They are Adult Family Homes(AFH), and Assisted Living Facilities(ALF)
Assisted Living Facilities are licensed to provide housing and care services to seven or more people in a home or facility in a residential neighborhood. An Adult Family Home provides services to six adults in a regular house in a residential neighborhood. S
Some online tools that The Evergreen Chapter recommends to help select an
appropriate facility are:
www.eldercare.gov, Assisted Living Facility Locator (For Washington)
Idaho Assisted Living Facilities
Montana Assisted Living Facilities
Alaska
Visit the facility before making a commitment. Having your questions thought out prior to the visit will help you know if this is an appropriate living situation. Good Questions include; Does the facility meet your standard of cleanliness? Can I adjust the temperature of your room. Do other residents socialize with each other, and appear happy and comfortable? How long has the Current administration been in place? Is their frequent Staff turnover. Is some level of nursing care available, and how often is it available? Be sure to be clear about what is important to you. And ask for References from former residents/or their family members.
Also contact the local Long-Term Care Ombudsman Program for your area. An ombudsman is a volunteer who listens to concerns and questions and works with residents, families, staff, local and state agencies and other organizations to resolve problems or answer questions. protects the rights of residents of long term care facilities (adult family homes, boarding homes, and nursing homes) and empowers residents and their families to advocate for high quality and compassionate care.
call 1-800-562-6028 ~ submitted by Oliver Ross
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Practical Solutions Workshop Follow Up - celebrating a successful event
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Bartja Wachtel speaking on well-being to the attendees
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Thanks to 67 participants, the ALS Association-Evergreen Chapter Practical Solutions was a big hit! Thank you all for your contributions to our Fall Fair. The feedback was overwhelmingly positive.
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"Thank you for inviting me. As a new patient, I found it very helpful"
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Forty two patients, family members and caregivers attended the workshop. Five featured speakers presented; Virginia Mason Medical Center, VMMC was represented
by Bartja Wachtel, SW, speaking on Well-Being. Roberta Kelley, SLP spoke about Swallowing Issues.
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Laurel Beck, PT ;Ron Porter, OT,
Merilyn Moore, RN |
Our own Marilyn Moore is featured here as Ron Porter, OT & Laurel Beck, PT demonstrated smooth transfers with a Hoyer lift. Michael Bower, Education Coordinator from the Alzheimer’s Association offered information on FTD Respite. James Shepard, SW from the Veterans Administration met with the veterans who attended. Vendors in attendance who offered their support were Absolute Mobility, Permobil, NuMotion, National Seating & Mobility, Coram Health Services, Walgreen’s Infusion Services, Performance Medical and Dynavox. Thanks also to our three Care services staff and five fabulous volunteers for making this a fun and successful event. It was very busy so not
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amazing ALS Workshop last Saturday. We could see how much work went
into that event and we are very thankful for you and the Evergreen ALS
group. We got a lot of good information from the workshop." |
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many pictures were taken but the food provided by Yukon Grill was plentiful and yummy. Thank you Absolute Mobility for sponsoring the lunch! A communication station was set up by John Wicks who handed out low tech communications boards to use in case of emergency.
The door prizes were a big hit and we had winners in the double digits. A resource room full of information and referrals provided a library where participants could check out relevant books. Several patients found useful items to borrow from our free equipment on loan. Again, thank you all for making this event possible! Our next Practical Solutions will be next Spring in Boise, Idaho. ~by Caryn Wise
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ALS Forum draws a crowd of students
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by NaDean Watkins
On October 2nd Washington State University and Eastern Washington University held the seventh annual ALS Forum at the Riverpoint Campus in Spokane, WA. The forum was open to the public with the primary focus of helping educate graduate students that are close to entering the workforce on Amyotrophic Lateral Sclerosis.
This year’s focus was one of encouragement and hope. Two pals; one caregiver and a survivor, shared their stories with students regarding what the first symptoms were, for them or their loved one, and how they were told that they had ALS. They share how the disease has progressed for them and some of the challenges they are currently dealing with. PALS encouraged grad students that when they work with ALS in the future that they try to think outside of the box, so to speak. Don’t be afraid to try new ideas and keep an open dialog with the patient they are working with. They were also encouraged to be good listeners and seek out additional resources and knowledge if they work with a disease that they are not familiar with.
In the seven forums that I have attended over the years, I am continually amazed at how each one is always so different from one another. And that each one has a life lesson to be passed on. I would like to thank the panel that came and spoke at the forum and for Washington State University and Eastern Washington University for hosting the forum. I look forward to next year’s life lesson. |
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