Treatment and Support for Families Affected by Alzheimer's and other Memory Disorders |
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Jan-Feb 2016
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Vol 7, Issue 1
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News
A newsletter for caregivers of loved ones with memory loss
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Interview with a Caregiver
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The following is Part II of an interview with a caregiver whose wife had Alzheimer's Disease.
(Click Here to read Part I of the interview from the previous issue)
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So Susan was going to the adult day program 5-6 days a week. How did you get started with that?
I'd been trying to get her to go for a year but she'd always say no. She'd just be sitting around doing nothing, seeing nobody but me, and I knew being around people would help. One day we left the house, leaving our dog, Charlie, behind. Susan said, "Charlie's lonely," so I said, "What about you?" and she nodded. I said, "Would you like for me to take you to a place where there are people?" and she said "Yes." We visited the center on a day when they had a dance program going on, and when she saw it she started dancing, then one of the dancers started dancing with her, and she just blossomed. I hadn't seen her smile like that in a long time. Then they started singing Christmas songs.
 During The 12 Days of Christmas she'd go to a different person for each day, going from one to another. We stayed about an hour, when we got ready to leave she asked, "Can I come back?" On her first day she went for only 4 hours, just as a trial for both her and them. In my opinion I didn't think she'd like bingo, but then I saw her playing, and when I went up to her and said, "I'll see you later," she just waved me away, intent on playing. Lesson learned: never look at a person with this disease and presume you know what they may or may not like! My regret is that I didn't get her into the program earlier because it was the best thing for her, as well as the best thing for me. I always felt that I was doing the best for her, but even though I had been told I should start her in an adult day program, it's not always easy to act on it because she said didn't want to. I don't mean I should have forced her, exactly, but I should have at least tried it, even though she said didn't want to. I didn't realize until much later that the reason she said that was that she didn't understand what it was, what was going on. You have to learn to get comfortable making decisions FOR them instead of WITH them.
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She started out helping them clean the tables, serve refreshments, things like that. As time went on, she lost those abilities but still enjoyed the program. She went 5 days a week for a year and a half until she was asked to leave.
What happened that caused the center to ask her to leave?
She struck someone. It turned out she was trying to save another person's favorite chair, and slapped a lady who tried to sit in it. You see, by this time she wasn't talking very well, and she often just made hand gestures to communicate. A day or two after this happened, I asked her if she had been keeping that woman from taking the chair and she nodded. But there was no use trying to explain to her that she shouldn't have hit the woman, she wouldn't have understood. I enrolled her in a different adult day program, and she continued there for four months, until I had to move her to a long-term care facility.
 Ultimately you realized that adult day wasn't enough, that you needed more help. What was happening during this period that led up to her move to long-term care?
During the year before I moved her, we were actually pretty stable. She'd come home from adult day program and would be in bed at 6:00pm. It got to where she didn't even want to eat supper. We traveled to my dad's funeral, and she did pretty well, but then as soon as we got home she took a down turn. She started waking up several times a night, and I couldn't figure out why; she didn't want to get up, didn't want to lie down, just wanted to sit up. One morning she just collapsed. Turns out she had Myoclonus, a condition almost like seizures. They couldn't figure out what triggered them, but they'd occur at any time. Her doctors finally found a medicine that seemed to help, but she was still doing it many months later when we moved to long-term care.
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There were so many times that I had to pick up on what was going on with her because she couldn't express them in words. I learned to read her more than I ever had before - her movement, demeanor, everything.
By this time she had become resistant to bathing. Actually she had been for a long time, but now it had gotten worse. She just flat refused, but sometimes she'd had accidents and really needed to be washed, so I just had to physically take off her clothes despite her fighting me. There was no coaxing her when she was like this.
I looked at a couple of facilities and chose one that I thought would be the best environment for her. But after I made the arrangements for her to move, I couldn't in good conscience take her there without telling her first. So the day before the move, I sat with her on the couch and said, "Honey, tomorrow you're going to a new home, you're not coming back here," and she had no response. The next morning I woke her up and said, "it's time to get up, come in here and let's have a shower," and I was braced for her to resist. She didn't do things like that because she was being obstinate, she just couldn't help it. But she was completely cooperative and uncombative about bathing and dressing that day. I don't know, maybe telling her the day before had something to do with it.
When I placed her I felt like I'd lost her completely, that she'd never be my wife again, she'd never be coming home. As hard as it was when she was home, at least she was still there, still my wife. In the facility, she hardly ever responded to me or anyone. Often when I'd feed her, her eyes would be closed. I'd sit next to her and she'd look elsewhere even when I held her hand or kissed her. But a couple of instances over next two and half years made me think maybe there was more there than I thought. One day I was feeding her and the staff in the room were carrying on a conversation about caregivers being lonely. One of CNAs noticed that Susan had tears in her eyes, and I said, "You're lonely too, aren't you?" and she nodded. Another afternoon they called that she had fallen, and they took her to the hospital where they had her immobilized. I figured she'd be fighting them over that. When I walked in, she said "Woodie's here," just as clear. Also, she was crazy about my son-in-law. He came to visit her about a year after she was placed, and when he was leaving she reached up and hugged him, which she never did with me or anyone else.
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 After she moved to long term care, she hardly ever acknowledged me, not by name, not even with a kiss which she'd sometimes done at home. I finally started to understand this was part of her disease, that it wasn't that she didn't love me. She didn't understand how to be like that any more. I tried taking her out for the afternoon sometimes, but realized that she wasn't comfortable going out any more, and decided that she was happier staying in the facility where she felt safe. I saw her every day unless I was out of town. I took her cookies, took her out on the porch, or sat with her on couch, knowing that I wasn't going to get any response.
Why did you keep going? She was my wife, I loved her, I felt like that's what I wanted to do. I wanted to see how she was doing, what needed to be addressed, because I was her advocate, that's all I could do for her. I found myself saying a lot, "she's gone," and to a great degree she was. But I realize now that there was more there than I thought there was.
What would you say now to someone who insists their loved one is "gone?" As long as there's breath in their body, there's somebody there. You maybe feel like you can't reach her but you don't know what's there, what's getting through. I wonder sometimes how much more she understood than I thought she did. One incident, when she was under hospice care and the nurse or chaplain and I were talking, and Susan came out with one word that was relevant to what we were saying. Where did that come from? My second wife calls it a 'shooting star,' those brief moments that come out of nowhere. Susan was in long term care for 2 years 8 months. How would you describe that period? It was a hard period as a husband and caregiver, knowing I was losing her, but also knowing that I had to find a life without her. It was a slow process. I kept up with old friends, and made new ones, some of whom were other caregivers from my support group or from the facility. Eventually, gradually, I lived a "single person" life although I was still very involved with Susan and her care and wellbeing. But I grieved her a little every day, for years, so that by the time she died, I had already lost her to a great degree. What was the hardest thing for you about your wife's having had Alzheimer's? The failure of the medical community to recognize it earlier. It wasn't until she was seen by MemoryCare that it was properly diagnosed and we got some help. Before that, she spent a year and half in a clinic for depression, taking meds, seeing a team of psychiatrists. If they had recognized it was Alzheimer's earlier, most of that might have been avoided.
The other part was nearly two years of 24/7 care: the constancy, the changes, the doing everything for her, the learning about this disease and how to cope. Our life did a 180. There was nothing for me, it was all about her, and I'd do it again but it's a lot harder than you realize.
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What would be your best advice for someone else starting along this road?
1. Learn every bit you can, and
2. Realize what is going on isn't their fault, it's a disease, they aren't the same person, they aren't what you've known them to be. They're not mean on purpose. This is probably the worse disease anybody could have.
EPILOGUE - nearly two years later....
I have since remarried, to a wonderful woman who had also been an Alzheimer's caregiver. Neither of us could have possibly anticipated this would happen for us. It is a testament to both of our spouses that we each had wonderful marriages and wanted to do it again.
There is life after Alzheimers.
Ed. note: CNN has been requested by this husband and caregiver to disclose his identity. Many of our readers will recognize
Woodie and Linda Dyches of Asheville, NC. This photo was taken in 2002, the year Woodie first noticed that Linda was showing symptoms. She was 60 years old.
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 Just what is Sundowning? Sundowning is a term for dementia symptoms of increased agitation, confusion, and hyperactivity that begin in the late afternoon and build throughout the evening. Sometimes called "late-day confusion," most sundowning emerges in about mid-stage dementia and might worsen as the disease progresses. It can include restlessness or pacing, emotional outbursts, wanting to leave, obsessive insistence about what is happening, refusal to cooperate, and inability to follow routine directions. The causes of sundowning are not clear, but two factors seem to be the main culprits. One is that dementia damages the body's inner clock - its circadian rhythms - resulting in a disturbed wake/sleep cycle that is especially noticeable at the end of the day. The other is fatigue - a person with cognitive impairment simply becomes exhausted from just trying to keep up throughout the day. Addressing these two issues can often reduce or eliminate the problem. Many fa milies have found that simply increasing the lighting around the person can help. Studies in Clinical Geriatrics reported that those persons who were exposed to more light late in the day showed less agitation because their bodies were better able to recognize the difference between day and night, thereby directing their biological clocks to get back on track. Putting a full-spectrum fluorescent lamp (2500-5000 lux) near the person for a couple of hours can make a big difference, especially on cloudy or gray days. |
 If the person appears tired, especially if they spent the day on the go or busy at an adult day program, simply moving them away from the center of activity and giving them a chance to rest, listen to quiet music, or enjoy a 5-minute hand or neck massage might be all that's needed to calm them down. Or, conversely, if they seem restless or bored, or if they had little or no physical activity during the day, engaging them in a pleasant task that's geared to their cognitive level - going on a short walk outside, playing a simple game, or helping with chores - can accomplish the same thing. Sundowning is often associated with periods of transition (i.e., moving from sleeping to wakefulness), but other causes can trigger symptoms as well: - Hunger - Try offering a snack to tide them over until dinner.
- Caffeine - Try limiting it after noon.
- Too much or too little sleep - Try to keep them on a routine sleep pattern. Sometimes a low dose of melatonin, a natural hormone that induces sleepiness or relaxation, can help. Ask your loved one's doctor if this would be appropriate.
- Remembering old routines - Spouses coming home at the end of the day, children gathering, dinner being prepared - any of these can spark memories of an earlier life. Rather than insisting that "Dad's not coming home from work, he's been retired for 30 years," try asking her what Dad liked best for dinner, and did she want to help set the table?
- Your own anxiety - Persons living with dementia are acutely tuned into your expression, body language, and voice tone. If you are feeling stress and anxiety, chances are pretty good that your loved one is picking up on it too.
You might even try implementing some of these ideas as a preventive, before the sundowning symptoms start. If they work, make them a part of your daily routine. The goal, as it is with many other challenges, is to have several different ideas available in your "tool kit." Take your cue from what's worked in the past, but don't be afraid to try something different.
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| Recommended Online Viewing |
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"Dementia Changes Everything!"
Click Here to watch Teepa Snow talk about caregiving issues
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ONGOING
PROGRAMS
Open to the Public
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MEMORYCAREGIVERS NETWORK
SUPPORT & EDUCATION GROUPS
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FLETCHER GROUP
First Tuesdays, 1:00-3:00 p.m.
Fletcher 7th Day Adventist Church
Howard Gap Road and Naples Road, Fletcher, N.C.
(just past Park Ridge Hospital)
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NEW HOPE GROUP
Third Tuesdays, 1:00-3:00 p.m.
New Hope Presbyterian Church
3070 Sweeten Creek Road, Asheville, N.C. 28803
(across from Givens Estates)
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WEAVERVILLE GROUP
Fourth Tuesdays, 1:00-3:00 p.m.
Weaverville First Baptist Church
63 N. Main, Weaverville, NC 28787
(North Buncombe County)
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There is no charge to attend any of the Network groups, but we rely on charitable support
to keep the program going.
To make a donation, contact Chad Conaty, Director of Development and Outreach,
at conaty@memorycare.org,
For more information about the MemoryCaregivers Network, contact:
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Mary Donnelly
828.230.4143
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Pat Hilgendorf
828.301.0740
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"CAREGIVER COLLEGE"
MemoryCare's ongoing educational series for caregivers
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A series of six lectures will be provided for anyone caring for a person with a memory disorder. Sessions are designed to improve caregiver understanding of different aspects of dementia care. Related presentation materials will be provided.
Course Content:
What Is Dementia?
Transitioning from Independence to Interdependence
Functional and Behavioral Changes of Dementia
Dementia Treatment Options & Risk Reduction
Caring for the Caregiver
Dementia and Legal Planning Issues
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The next series begins March 8
and will run every Tuesday through April 12, 2016.
Time: 3:15 - 5:45pm
Location: South College, Room 104
140 Sweeten Creek Road, Asheville
Leader: Margaret Noel, MD
There is no fee for caregivers enrolled in MemoryCare.
For all others, there is an $85.00 attendance fee for the course.
Space is limited so please sign up via our office in advance!
For more information, contact MemoryCare
828.771.2219 or office@memorycare.org
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SCROLL DOWN
for MORE COMMUNITY EVENTS!
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Caregiver Network News
is made possible by the charitable support of donors.
It is an auxiliary program of
Our Mission is three-fold:
To provide specialized medical care to older adults with cognitive impairment;
to support caregivers with education, counseling,and improved access to services; and to provide community education.
MemoryCare relies on charitable donations for operations.
Please consider MemoryCare in your estate planning.
Click this link to visit our website: www.MemoryCare.org
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Do you need a program for a group event?
Public education is not only a part of the President's National Plan to Address Alzheimer's Disease, it's a part of MemoryCare's mission statement.
The MemoryCaregivers Network staff can provide speakers on a variety of subjects, including Recognizing Early Warning Signs of Memory Loss, Facts and Fiction about Dementia, Better Communication Techniques, and more.
or Chad Conaty, Director of Development & Outreach, at conaty@memorycare.org
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OTHER COMMUNITY PROGRAMS & EVENTS
(The following programs are not part of MemoryCare but help our community by serving those impacted by memory impairment.)
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G.O.L.F.
(Gentlemen Only Lunch Fraternity)
A monthly gathering of Gentlemen Caregivers
It's not a support group. It's not a meeting.
It's just a bunch of guys getting together. After all, why should the ladies have all the fun?
Meets every 2nd Tuesday, 12:30pm
Tupelo Honey South
(1829 Hendersonville Rd, across from Gerber Village)
No RSVP required, just come join us!
For more information, contact Woodie Dyches at 828.712.9726, woodrow344@yahoo.com or Bob Devereaux, 828.777.5467, rldead@charter.net
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Memory Loss Caregivers of East Buncombe
An education & support group for caregivers
sponsored by the Highland Farms Residents' Corporation
Meets every second Tuesday
9:30-11:30 a.m.
Lounge Room 3 (lower level), J-K entrance of Brookside Building
Highland Farms Retirement Community, Black Mountain, NC
Free and Open to the Public
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For more information, contact:
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Mary Donnelly
828.230.4143
marydd60@charter.net
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Pat Hilgendorf
828.301.0740
patricia.hilgendorf@gmail.com
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Henderson County Caregiver Support Group
Two meetings every third Tuesday
1:00 p.m. AND 3:30 p.m.
First United Methodist Church
204 6th Ave W, Hendersonville, NC 28739
For more information, contact Lisa Kauffman at 828.696.9799
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Support Groups for Persons Living With Memory Loss
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The New Hope Group
1:00-2:30 p.m. on the third Tuesday of each month
(meets concurrently with the MemoryCaregivers Network New Hope Group above)
Pre-Screening Required, contact Mel Kelley, 828.301.0529 or avant_garden@msn.com
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The Biltmore Group
1:00-2:30 p.m. on the second Thursday of each month
Biltmore Methodist Church
376 Hendersonville Road Asheville, 28803 (Exit 50 off I-40)
Pre-Screening Required, contact Cannan Hyde, 828.357.8307 or cannanhyde@att.net
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The Highland Farms Group
9:30-11:30 a.m. on the second AND fourth Tuesdays of each month
(2nd Tuesday group meets concurrently with the Memory Loss Caregivers of East Buncombe above)
Contact Mel Kelley, 828.301.0529 or avant_garden@msn.com
The Hendersonville Group
1:30-3:30 on the second and fourth Tuesdays of each month
Mud Creek Baptist Church
Contact Patty Williams at 828.692.1262 or patty@mudcreekchurch.org
Initial screening required for all early-stage groups.
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Memory Cafes
A Social Gathering For Those with Memory Loss and their Friends & Families
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First Baptist Church, 5 Oak Street, Asheville
Third Thursdays, 1-3pm
Calvary Episcopal Church, 2940 Hendersonville Road, Fletcher
Third Saturdays 2-4pm
Sylva First Baptist Church Fellowship Center, 669 W. Main St, Sylva
(collaboration with First Methodist, First Presbyterian, & St. John's Episcopal)
Second Thursdays 10am-12pm
828-452-2500 meltonann@att.net
Hendersonville First Baptist Church, Crosswalk Bldg, 577 Buncombe St, Hendersonville
Second Mondays, 1-3pm
828-388-1421 vaelwell@yahoo.com
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Come for Fun, Relaxation, and Socializing in a Café-like Setting!
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"Winter is on my head,
but eternal spring is in my heart."
- Victor Hugo
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Caregiver Network News is written and edited by Mary Donnelly.
Contact network@memorycare.org for more information.
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to access our archives and read previous issues.
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