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 "Spousal caregivers confront brutal challenges" 
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post "Spousal caregivers confront brutal challenges"
A local support group member mentioned this article to me at last night's support group meeting. Someone interviewed in this article makes the point that "spousal caregivers typically take on greater burdens than they can reasonably handle and wait longer to ask for outside help, because they feel like it would 'betray the relationship'."

The article ends with this list from the National Family Caregivers Association of suggestions for all family caregivers (not just spouse caregivers):

* Accept offers of help: Do not carry your burden alone. Build a support system from friends, neighbors, family and church groups.

* Give yourself a break: Make a schedule that provides you with some off time to focus on your own needs.

* Watch your own health: Don't put off doctor appointments. Be sure to eat right and get your exercise -- even a few minutes a day can make a difference.

* Review your loved one's health care coverage: Some health plans for people on Medicare and Medicaid provide support to family caregivers, such as respite care and transportation help.

* Seek expert advice: Care managers offered by some health plans can help you shoulder your caregiving responsibilities by guiding you to resources and services. Joining a support group in your community may also be a major benefit.


Here's the full text and a link to it.


http://www.mercurynews.com/family-relat ... i_15686085

A 'lonely marriage': Spousal caregivers confront brutal challenges
By Chuck Barney
Contra Costa Times
Posted: 08/08/2010 08:49:42 AM PDT

In the years before her husband, Denny, slipped into the throes of Alzheimer's disease, the 11th day of each month held special meaning for Michele McGarraugh. Without fail, Denny marked the date by presenting her with a robust bouquet of flowers. Eleven, after all, was his lucky number, and it was on the 11th of June in 1977 that they exchanged wedding vows.

But now, another date -- Sept. 29, 2009 -- is engraved on Michele's mind. That's when Denny, 72, first approached her with a quizzical look on his face and uttered the words, "Who are you?"

"I literally could not breathe for a few seconds," she recalls. "I knew that day was coming, but I wasn't ready for it. My throat tightened up, and I just cried."

It was a chilling sign of things to come for Michele, who would see her marriage drastically transformed as she took on the duties of spousal caregiver. During happier times, the McGarraughs were equal and active partners in every sense of the word. They camped, backpacked and traveled together. They even worked together, running a business out of their Alameda home.

But with Denny's faculties progressively fading, the dynamics of their relationship are very different. Every day, Michele, 58, bathes Denny, dresses him, shaves him and prepares his meals. She cleans up after his nightly bouts of incontinence and tries to calm her husband by reading to him. She rarely lets him out of her sight, fearing that he'll fall and hit his head, or wander off.

It's a grueling and disheartening existence, but Michele vowed to be there "in sickness and in health," and she meant it.

But does it even feel like a marriage anymore? Yes, she insists, just not quite in the same way.

"I used to love it when I'd be in the kitchen cooking, and Denny would sneak up from behind, wrap his arms around me and kiss me on the back of the neck," she says. "I think about moments like that, and there's kind of a yearning ... but then I snap out of it."

Caring for a sick or disabled relative exacts a brutal toll -- physical, emotional, financial -- on any involved family member. But for spousal caregivers, the challenges and traumas are even greater, says Linda Fodrini-Johnson, executive director of Eldercare Services in Walnut Creek.

"It's the long goodbye. You're slowly losing the person you've become accustomed to sharing your life with," she says. "And now that person can no longer give you what you want or need. You have more loss. Your heart is more broken."

She points out that spousal caregivers typically take on greater burdens than they can reasonably handle and wait longer to ask for outside help, because they feel like it would "betray the relationship."

And too often they pay a high price in terms of their own health. Studies have shown that spousal caregivers are prone to loneliness, depression and insomnia. And the American Medical Association reports that elderly caregiving spouses have a 63 percent higher chance of dying than people the same age who aren't caring for spouses.

"It isn't all that uncommon," says Fodrini-Johnson, "for the caregiver to precede his or her spouse to the grave."

Complicating matters is the fact that spousal caregivers find themselves presiding over the gradual disintegration of the most vital relationship of their lives. They dearly miss the healthy, vibrant version of their mate. And because of the constant demands on their time, they lose many of the things that were part of the relationship: dinners with friends and family, holiday events, vacations, birthday parties, graduations, the birth of a grandchild.

"I think, in some ways, the human organism is better equipped to handle a death," says Jan Cecil, a Berkeley woman whose husband, John, 67, is afflicted with a form of dementia. "After a death, you grieve and eventually get a sense of closure. But this goes on and on. The waves keep coming at you."

Jan, 66, who has been married 42 years, placed John in an assisted living facility in 2007.

"On the days when I really miss him," she says, "I go into the closet and put on one of his flannel shirts."

Orinda's Paul Barrett can relate. After his wife, Diana, now 63, was diagnosed with Alzheimer's at the young age of 56, he tended to her on his own for several years as her condition rapidly worsened. Finally, he set aside his feelings of guilt and placed her in an assisted living facility.

"I couldn't do it anymore," he says. "I was just struggling to keep up with life."

Diana since has lost her ability to speak (she only makes incoherent mumbles), but Paul visits her almost daily. She typically greets him with a smile and a hug while clutching a baby doll.

Paul typically shares breakfast or lunch with Diana and takes her for a walk before returning her to her room. There, on the dresser, sits a framed photo of the couple taken in 2009 that commemorates their 36th anniversary. The caption reads: "To love is to receive a glimpse of Heaven."

Paul now finds himself coping with what he calls a "lonely marriage."

"I miss being able to talk to my soul mate about the weather, the news, how the day is going ... about anything," he says. "Diana was always very verbal, and I would sometimes tease her about talking too darn much. Now I think about what I would give to have that back."

Among the many challenges spousal caregivers often confront is a change in traditional roles. The wife, for example, might find herself having to pay the bills or oversee household and yard maintenance. Men might have to learn to cook and clean.

"Little by little, the things that your partner did migrate onto your list of things to do," says Dena Heath, a 62-year-old Walnut Creek resident who tends to her husband, Bill, who suffers from a rare life-threatening bone marrow disorder called primary amyloidosis. " ... There is no way to avoid it. Your job just gets bigger and bigger. And little by little, your personal needs are replaced by those of a sick spouse."

Heath admits that she and Bill don't celebrate their anniversary anymore, but, in some ways, she feels "more married than ever."

"A lot of marriage is about the easy part -- the 'what should we have for dinner tonight?' The daily routines. The chitchat about your day," she says. "(This) has been a journey filled with many blessings. I have a renewed appreciation for friends and family ... and a new understanding of what really is important in life on a day-to-day basis."

And her husband Bill, 68, has a renewed appreciation for her.

"I'd be dead without her," he says. "That's no joke."

Still, there is a gulf in the relationship. Many spousal caregivers yearn for the physical intimacy they once shared with their partners. Michele McGarraugh admits that, though she still hugs and kisses Denny every day, she hasn't had sexual relations with her husband in nearly four years.

"Part of it is because of me," she says. "It sadly got to the point where it was never successful, so I didn't encourage it. Not even an overture."

That said, it probably should come as no surprise that spousal caregivers -- especially those tending to partners with cognitive diseases -- sometimes look elsewhere to fill the intimacy void.

Cecil admits that the thought of being with another man has occasionally crossed her mind. "I think all your rigid moral codes simply disappear in a situation like this," she says.

And, indeed, she did recently go on a hiking date with a man, who wanted to pursue another get-together. Cecil, however, didn't return his call.

"I guess I just wasn't ready," she says.


Mon Aug 09, 2010 7:19 pm
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Post Re: "Spousal caregivers confront brutal challenges"
I disagree that our 'moral codes' or, for that matter, our marriage vows, 'disappear' when our spouse is impaired. I wonder what part of 'for better or for worse...in sickness and in health' she doesn't understand.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Aug 09, 2010 7:53 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: "Spousal caregivers confront brutal challenges"
I guess the same part of the vow that Justice Sandra Day O'Connor's husband didn't understand when he wanted to get married to a woman in his care facility, and Sandra Day O'Connor allowed this to happen.


Mon Aug 09, 2010 8:50 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
Post Re: "Spousal caregivers confront brutal challenges"
I agree with Pat, I repeat those words, "for better or for worse" almost daily. We enjoyed a lot of the ""better" and now we have to figure out how to deal with the "worse". I must admit I miss hopping in the car to go for a ride, packing a picnic and driving to the ocean, or just having a meaningful conversation with Frank. I'm not sure what he knows or feels I can only image and feel sad for us. Life is a challenge, but we also said "till death do us part".

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


Mon Aug 09, 2010 9:03 pm
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Post Re: "Spousal caregivers confront brutal challenges"
I haven't walked in her shoes and I am not going to pass judgement. All of us have shortcomings and I have never understood why sexual shortcomings trump thiose of greed and just plain meanness. But that's me. A good friend of mine went to the nursing home every day for hours to be with his wife who eventually died from complications r/t Parkinson's. I know he found solace elsewhere. It shocked me and I am afraid I reacted poorly. So I certainly can pass judgement, too.

As for me, i am just too tired to be interested, so it is right now beyond my comprehension. Brad Pitt or George Clooney or whatever the heartthrob would be could come a callin' and I would pass with a yawn. Foolish me.

Nan


Mon Aug 09, 2010 11:23 pm
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Joined: Wed Dec 12, 2007 4:53 pm
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Location: Melbourne Beach, FL
Post Re: "Spousal caregivers confront brutal challenges"
I guess it's just different strokes for different folks. My husband has been dead almost a year and the hole in my heart is still fresh. He never reached the point where he didn't know me. He did think there were two of me for a while: one named Joy and the other named Gay. Medication overcame this and he knew there was only me. But I digress from the topic.

When he was living, caring for him was so all-consuming that the only interest I had was in sleep and/or just a little rest off my feet. Had he been in a SNF or NH and no recognition of me, I may have felt differently (but I cant imagine it). Now that it has been almost a year since his death, I have no yearnings or interest in anything but friendly relationships (within a group setting), the friendship being the same no matter whether the friend is male or female. There are dear married friends with whom I am lucky to have separate and different relationships with each of them. I don't isolate and, while I am not ecstatically happy, neither am I miserable nor depressed.

However, I have several friends who began dating and some have remarried within a few years of the death of their spouse. About a month ago, a friend from church who lost her spouse less than six months ago announced that she was getting married to a childhood sweetheart within the month. I was shocked and after thinking about it, I concluded that some of us are too old to waste a lot of time of on what is considered an acceptable period of mourning. So, I decided to be happy for her. Personally, I don't feel I could ever accept any sort of romantic or sexual relationship with another man, and my friends recognize and honor my feelings. My husband said so many funny little cliches that I remember and think that while he was just being funny, he was also profound.

"That's why they make chocolate and vanilla,"

Joy


Sun Aug 15, 2010 4:07 pm
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Post Re: "Spousal caregivers confront brutal challenges"
Joy, what kind of medication cured his Capgras delusions? We've been living with it for over two years now and it's pretty well taken over. He never knows I am 'me' any more.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Aug 15, 2010 4:28 pm
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Joined: Wed Dec 12, 2007 4:53 pm
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Location: Melbourne Beach, FL
Post Re: "Spousal caregivers confront brutal challenges"
Dear Pat:

The first medication that the neurologist prescribed was Aricept and that made Charlie crazy and he felt awful. After bringing him down off Aricept, he put him on the Exelon patch. Charlie had sensitive skin so he switched to the oral Exelon. By the time he worked up to 9 mg. twice a day, the hallucinations stopped and he stopped thinking there were two of me. As time passed, the dosage had to be increased to continue to control the hallucinations and Charlie's alertness. When the medicine was clearing his system, you could see a physical as well as mental change. Once the medication cleared his system, It took about an hour for the next dose to have effect. The neurologist first tried dividing the prescribed daily dosage to 6 mg. three times a day, but the 6 mg. wasn't enough. That is when the doctor told us that he would increase the dosage because it obviously improved both Charlie's mental and physical state, but that we were in uncharted territory, that he knew of no one that could tolerate the higher dose due to gastric distress. By the time Charlie died, he was taking 6 mg. every four hours round the clock and he did not hallucinate nor was he delusional. He never had any gastric problems either.

Until Charlie received the high dose of Exelon, several other medications were prescribed for sleep, vivid dreams, parkinsonism, etc. but nothing else worked. He only took Exelon and Namenda (which I think helped stabilize his memory). I don't know which helped the "word salad" but that also stopped being a problem.

Charlie was distressed over the progressive pain in his legs and losing the ability to walk very far, drooling, swallowing, and incontinence (urinary and fecal). He had macular degeneration and that seemed to get worse too.

It would be great if Exelon worked for Derek.

Joy

Joy


Mon Aug 16, 2010 10:42 pm
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Post Re: "Spousal caregivers confront brutal challenges"
Thanks, Joy. Derek has been on the Exelon patch since 2007. It did help dramatically in the beginning. We have no way of knowing if it still has any effect. Maybe he would be even worse without it.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Aug 17, 2010 12:32 am
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Post Re: "Spousal caregivers confront brutal challenges"
I agree whole heartedly with Joy. We were on the path at the same time. I too have friends who have moved on very quickly after loosing their LOs...while my heart has the "hole" Joy mentions. What is right for one may not be for another. We all deal with grief in our own time, manner, our own way. I am fine going out to dinner with friends, couples, a group but have no inclination or desire for a one on one relationship. Perhaps we were fortunate to have already found and had our soul mates in our lives and enjoyed that special relationship that left us feeling loved and secure inside...but now alone. And I have found being alone isn't as bad for me as it is for some. I certainly do miss my LO a lot and am still grieving for him but know it was "his time". Something Robin said when I was deeply grieving: would you really want him back, in that condition, suffering, going through the depths of caregiving? I had to answer myself truthfully: NO I would not. It helped me face reality of the situaiton, to deal with things and start to move on. While I still love and miss him terribly, to want him here in that state would be unkind for both of us. We still have all of those special moments to cherish. I am peaceful knowing how fortunate I was to have had that special love...a kind some seek yet never know. I too miss the conversations, laughter, the funny little things we did together, knowing what the other was thinking or about to say...but in my heart I know he is no longer suffering from LBD and that gives me a rare kind of comfort.
Missing him yes...today the first anniversary of his death...regrets...no. He is at peace...and when the grieving is over, if it is ever really over...I too will experience a new found peace.
Big hug to all of you caregivers today. You are very special people.

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Dianne C.


Fri Aug 27, 2010 9:40 am
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Post Re: "Spousal caregivers confront brutal challenges"
Dianne,
Sending special thoughts your way today.
Robin


Fri Aug 27, 2010 11:43 am
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Post Re: "Spousal caregivers confront brutal challenges"
Big, big hugs to you today Dianne and a toast at what time tonight? You're on Mountain or Pacific, and I'm on EDT.

_________________
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.


Fri Aug 27, 2010 12:00 pm
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Post Re: "Spousal caregivers confront brutal challenges"
Oh, Dianne! My warmest thoughts to you today! You've borne up nicely and it's such a blessing to have you remain a part of the forum. People in the 'after' group are so important to us for encouragement and inspiration. Thank you!!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Aug 27, 2010 12:40 pm
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