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 "Living with the unknown" (article on LBD caregiver) 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post "Living with the unknown" (article on LBD caregiver)
This is a wonderful article about local support group member Jackie Smith and her late husband Mack. "At first Mack's specialists thought he had Parkinson's, often a misdiagnosis for LBD patients because of similar symptoms. He was treated for two years, but nothing improved; in fact, he seemed to get worse. Frustrated, Jackie took Mack to see Dr. Amy Chagnon, a neurologist" in Sonoma. Dr. Chagnon diagnosed Mack with Dementia with Lewy Bodies. When Mack died in February, Jackie donated his brain to the Mayo Clinic. The DLB diagnosis was confirmed.

Some LBD support group members will be putting on a non-Alzheimer's dementia conference this Saturday in Sonoma. Info about the event was posted to lbda.org several weeks ago. Jackie will be attending. (I believe she is a member here but hasn't posted in a long time.) Dr. Amy Chagnon, the neurologist who got Mack's diagnosis right, and Dorothy Foster of the Redwood Caregiver Resource Center will be speaking at this Saturday's conference.

--------------------------------

http://www.sonomanews.com/News-2011/Liv ... hkKc.gmail

Living with the unknown
BY PAM GIBSON
SPECIAL TO THE INDEX-TRIBUNE
Aug 8, 2011 - 06:39 PM
Sonoma News

In anyone's book, Jackie Smith is the epitome of a strong woman.

Attractive, smart and well-connected, she served on Sonoma's Cultural and Fine Arts Commission for years, and was a long-time champion of efforts to preserve the Sebastiani Theatre. She and her late husband, Dr. W. McFate Smith, contributed to many local causes and "Mack" was a staunch supporter of local healthcare, serving on the board of both Sonoma Valley Hospital and the Community Health Center.

Today, Jackie looks much like she always has - trim, well-groomed, and gracious. She has a quick hug and a warm smile for old friends, but there are changes in her life. Mack, her husband and best friend, died in February.

And while she is still grieving, in her heart she knows that it was a blessing.

Mack had a disease called dementia with Lewy bodies, a form of dementia that plays tricks on the mind and burdens the sufferer with fear. Sharing some of the same traits as Alzheimers and Parkinson's, patients show a progressive decline in mental ability that affects memory, thinking, behavior, and physical activity. In addition, there are strong visual hallucinations.

For Mack and Jackie, it was a living nightmare.

Like most long-time married couples, the Smiths had looked forward to their retirement. They planned to travel and play golf and had invested so they could afford the lifestyle they had planned.

All that changed about six years ago when Mack started losing his balance, his memory, and his energy. It got worse when he began to see things that weren't there.

"I remember a trip to Hawaii. We were in an airplane and Mack said something about people out on the wing. It should have been a warning, but I thought he was kidding."

At first Mack's specialists thought he had Parkinson's, often a misdiagnosis for LBD patients because of similar symptoms. He was treated for two years, but nothing improved; in fact, he seemed to get worse. Frustrated, Jackie took Mack to see Dr. Amy Chagnon, a neurologist at Sonoma Valley Hospital. She made the correct diagnosis.

The bad news was that there is no cure and there really isn't any drug that can help. In addition Lewy body people are extremely sensitive to certain medications. Jackie had to educate those who treated Mack for other ailments so they didn't give him what they normally gave other people.

"Mack had fluctuating cognition. He was in and out. He knew what was happening and it was devastating for him as a physician. He couldn't accept it. He wanted it to go away and it wouldn't."

In 2009, Mack still recognized people. He was most engaged talking about the old days, looking at photo albums and his old pilot logs from flying. But short-term memory was all but gone, and while he could follow a televised sporting event, he could no longer read and was often confused.

Jackie's biggest challenge at the time was educating herself.

"Caregiving changes your life. When caregiving challenges began, I realized I was the one who needed help. I couldn't do it on my own. I'm a trained nurse. I could handle the physical stuff. I needed help from paid professionals with the rest."

For Jackie, who was once completely involved in her community, the social isolation was the worst part. It wasn't just dropping out of everything she once cared about, but not having anyone to talk to. "I'd lost the person I always carried on a conversation with at home. Mack could understand some things, but then the conversation often went in a whole different direction."

And there was the quiet, the loneliness, the emotional stress. And all the questions you ask yourself. Is this my fault? Could I have done something to prevent this? The questions ate at her until she couldn't deal with them anymore.

"It took a few months before I realized I had to make the call - I had to get help. I needed some relief in order to protect my own sanity."

Relief came from the Redwood Caregivers Resource Center, a group that reaches out to caregivers with resources, classes, counseling and people trained to take over so the caregiver can get out. Jackie enrolled in their classes and learned how to respond, how to react, and how to make the best of her situation

"One of the classes is called 'It Takes Two.' ... They teach you how to communicate, how to 'go with the flow,' how to converse at a different level," she said. "Lewy body people see people and things and animals that aren't there. They sometimes think there is a conspiracy to have them drugged. They see people walking through closet walls and reflected in mirrors. You have to know how to deal with this, how to calm their fears."

Because Mack was active in numerous medical research projects and hospital committees over the years, he often thought he was missing a meeting. He sometimes thought he was at a hotel, not at home, or needed to be somewhere, when he didn't. While she learned how to reassure him that he was safe, Jackie constantly had to watch her body language, which Mack reacted to. And when the disease had totally captured her husband, there was no such thing as a good night's sleep.

"My toughest struggle was believing that I couldn't do anything to change the situation and I struggled with guilt," she said. Finding the Resource Center gave her new tools and she hopes others, who are in a similar 'mental place' will reach out to them for help.

"They teach you to breathe deeply, to try to take things in stride. I couldn't do that. Mack had always been a leader, a man in control, a healer of others. That's why I was so sad. The man I was caring for wasn't him. It was someone else. The up and down roller coaster that had become our life, wasn't ours."

Jackie has learned not to cry when she talks about her life, but her eyes still fill and her voice sometimes catches. "What the classes taught me is that I wasn't alone. And it is important that I get this message out to other people in similar situations. Redwood Caregivers is a blessing. They provide helpers so you can go to classes. They do one-on-one counseling, and it is free."

The classes are not just for Lewy body dementia, but for those caring for people with other forms of dementia such as Alzheimers or stroke-related illnesses. They also reach out to other family members to tell them how important their help will be to the caregiver.

"I've heard people say 'my kids are in denial' and won't help," said Jackie. "But Mack's three children met with the counselor who went over everything. It was important for them to understand. They were all wonderful."

Meeting with other caregivers gave Jackie new perspective. At one point, she was able to attend a two-day retreat sponsored by Redwood Caregivers with 50 others in similar situations. The organization paid for respite care while they were gone. It worked because Mack's children helped fill in as well.

Lewy body sufferers typically live five to eight years after diagnosis, depending on their over-all health. After four, a decline is usually evident. At that point, the caregiver must decide how long to keep the patient at home. Fortunately, there are classes that help the caregiver make that decision. In Jackie's case, she was able to keep Mack at home until the end.

"Sometimes these decisions depend on your own health and your finances," she said. "And there are legal issues, such as separate powers of attorney, wills, and other details. I know people who have lost everything financially, dealing with medical and caregiver issues."

Financial and legal issues can be mitigated, but the emotional pain is always present.

"One of the classes given is called 'Managing Anger and Frustration.' I flunked. I wasn't so much angry because we'd lost everything we were going to do together, or that I couldn't get out. I was angry because loss of social contacts is so isolating. Friends tended to be uncomfortable in Mack's presence. They stopped visiting. And I was frustrated because all this happened and I couldn't do anything about it."

Jackie recommends taking the class again if a caregiver has not yet reached inner peace. In the meantime, she says, just cope. If you're down, pick yourself up and get moving again. The care-giving classes will help you deal with stress and will help alleviate guilt about taking care of yourself. While a good part of paid caregiver time is taken up with running necessary errands, she recommends taking time for an occasional golf game, massage, a midday movie, lunch with friends-anything that you like to do.

"I don't think at the time I would have done those things without the support of the classes," she said. "My life was a constant tight rope. I had to be 'on' all the time. There were no neutral times, no 'in betweens.' Every minute was different. I just wanted to be able to get through the day."

Dorothy Foster, clinical supervisor at Redwood Caregivers Resource Center at the time Jackie was a client, said caregivers sometimes decline faster than their patients.

"They are so busy taking care of their family member, they don't have time to get their own needs met," she said. "They are under constant stress and are at an increased risk for such diseases as depression, heart disease, cancer and diabetes."

The organization helps provide information about the diagnosis, finding services and support groups, and providing classes and ongoing support - even counseling. It provides respite grants and legal services. There is no charge, but donations are accepted.

"People with health insurance can see a doctor, but their insurance often does not pay for home care," said Foster. "If it is unsafe to leave the patient alone, you have to pay someone to come in while you go to the grocery store or your own doctor's appointment."

For some, the cost of the care is devastating. Houses have been sold and lifestyles changed to afford the care.

Jackie counts herself fortunate she still had the resources to care for Mack. In his final months, the Smiths moved to a one-story home in Oakmont, and eventually, Hospice provided care.

"There was a time when I was paralyzed," said Jackie. "I didn't know what to do. Then I realized I had to go on a different journey and try to be a rainbow in Mack's darkening cloud."

She advises others not to wait, but to seek help early, so their own journey to healing can begin.


Tue Aug 09, 2011 12:05 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Re: "Living with the unknown" (article on LBD caregiver)
Extremely interesting!

Dorthea


Tue Aug 09, 2011 7:28 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: "Living with the unknown" (article on LBD caregiver)
I enjoyed reading this article and the one from Canada. Most of our stories are the same, just differ from day to day, month to month and etc.
Thank you,
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Wed Aug 10, 2011 6:53 am
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: "Living with the unknown" (article on LBD caregiver)
robin...thank you for the article.. im sure we can all see bits and pieces of ourselves in there..

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Aug 10, 2011 4:11 pm
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: "Living with the unknown" (article on LBD caregiver)
Thanks Robin - it's a good article....it's sometimes hard for me to read from the caregiver point of view about the late stages - but it's good also for me to be as informed as possible so if I can, I can do things now that might make a few things easier for my husband later.......

They only thing I hope is not quite accurate in this article is when it was stated that he "was no longer her husband".....I hope and pray that even if from the outside I no longer resemble anything of my former self, that on the inside, the things that are the essence of who I am will still be in there...even if I can never expressit....I hope that my husband who believes (at least right now) that this will be true, that I will always be in there, will have even just a little easier burden in caring for me knowing I am still in there......

Of course no one will ever know the answer to this for sure regarding later stages....it's just something I need to believe and that I am grateful my husband believes it too....I'm sure it might be harder for him to believe it one day (hopefully a long time from now) when I may be in the late stages.......but I hope that he can.....and that it will help him in some small way.....

Best wishes all,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Aug 10, 2011 4:46 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: "Living with the unknown" (article on LBD caregiver)
tonya.. thank you for your thoughts... even it must be hard reading and thinking of the far distant future.. your thoughts remind others what their loved one may not be able to express..

sometime in the middle of all of this, the real person inside gets lost in the everyday hustle bustle.. its good to stop and take time to remember that special person.. thank you!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Wed Aug 10, 2011 9:49 pm
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Post Re: "Living with the unknown" (article on LBD caregiver)
Thank you Cindi and all the wonderful caregivers here.....I can't imagine how much inner strength it takes to do what all of you do each day and you all give me hope that one day I will be well cared for......

All my best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Aug 10, 2011 10:02 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: "Living with the unknown" (article on LBD caregiver)
This is a very good article. I don't think it is correct when it states there isn't any drug that can help. There is no drug that's a cure. There is no drug that works the same way for everyone. But there are many drugs -- don't we know it from experience -- that can help make that 5 to 8 years (or 2 to 20 years) from onset to the final stage a higher quality experience than without the drug. I hate the implication that there is nothing that can be done. At some point there may be nothing more that can done. The disease will progress. But no drug that can help? I don't agree.

Tonya, many times I have said to myself, "It is not my husband behaving this way. It is Lewy." In that sense I understand the concept that "he is not my husband." But Coy is in there somewhere. I know it. Even when Lewy is in control, it is Coy I am helping, it is the man I married who I am aching for and fighting for and advocating for.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Thu Aug 11, 2011 2:13 am
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Joined: Wed Mar 02, 2011 1:04 pm
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Post Re: "Living with the unknown" (article on LBD caregiver)
Jeanne,

I agree completely about the medicines...they have helped my significantly....

Also thank you so much for your words - it means the world to me that you say you know Coy is in there! I can't tell you how much it means to me to hear that......You are so wonderful to him!!!

Take care,

Best wishes,

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Thu Aug 11, 2011 8:55 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: "Living with the unknown" (article on LBD caregiver)
I think with any type of dementia, the person that the family and friends once knew is lost little by little....until you are caring for a largely unknown person. I see families rely on all the good memories and the deep love they have for that person to get them through this emotionally challenging time.


Thu Aug 11, 2011 12:51 pm
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Post Re: "Living with the unknown" (article on LBD caregiver)
For some of our LOs, there were no drugs that helped them. The drugs they were prescribed not only were a waste of money, but they only made things worse. So, for those of you who have LOs who respond well to certain meds, that's great and you are very lucky. For some of us, it was a totally hopeless situation where NOTHING made anything better, despite a lot of trying to make things better. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Aug 13, 2011 11:13 am
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Post Re: "Living with the unknown" (article on LBD caregiver)
I agree, Lynn. If the article stated that none of the available drugs worked for this person, no argument. I think the general statement that there aren't any drugs that work is overly pessimistic. There are enough doctors out there whose attitude is "why try?" without perpetuating that notion in an informative and interesting article like this one.

Coy's PCP said, "He has dementia. There is nothing that can be done. Here is a script for a walker so his insurance will pay for it. Good bye and good luck." Considering that there was quite a bit that could be done once we got Coy into the hands of a knowledgeable doctor, I deplore the first docotor's attitude.

True, some victims of this terrible disease do not respond to the treatment plans developed to date. That is not the same as no victims respond to the available treatment plans.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sat Aug 13, 2011 3:03 pm
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