Monday, November 16, 2015
Tuesday, November 10, 2015
Caring for a Loved One with Dementia: It Takes a Village
In my last report on Charlie’s journey with his latest health crisis, he had moved to his daughter’s home five hours from me. It seemed to be going well, but then things suddenly took a turn. His daughter found that full-time caregiving in a home setting on top of responsibilities for children, a husband and a home to manage was more than she could handle. At her wits end, they arrived on my doorstep in the middle of the night three weeks ago.
Charlie was ecstatic to be home, while I welcomed him with trepidation. At the end of his hospital stay, I was prepared to place him in nursing home. To have him suddenly returned home, with all VA help discontinued, was upsetting to say the least. The first thing I did was reapply to the VA to have the Home Based Care Plan and Veterans In Place program re-established. This involved a lot of paperwork, and I am still waiting for the services to begin. In the mean time, we are muddling through, but doing surprisingly well. His condition has improved considerably since he was discharged from the hospital. In fact, physically, he is almost back to where he was before a bacterial infection and rheumatoid arthritis laid him flat. However, his mental acuity has suffered. A VA provider gave him a mental test this week in which he scored one-half what he scored six months ago. Today he cleaned his glasses with Whiteout, the product meant to cover errors on paper. In case you were wondering, no—it is not water-soluble. I laughed hysterically as I scraped it off his glasses with my fingernail.
His incontinence has also worsened since his hospitalization. The doctors are not sure what to blame for that; it may just be a result of his worsening dementia. So far, he is able to use a urinal at night, so I can sleep through the night without getting up 5-6 times to help him to the bathroom. The downside was the night he spilled his urinal on the newly cleaned carpet. There was a throw rug in place to catch such spills, but, as luck would have it, it overshot the rug. I’m afraid I lost my cool over that one. Charlie’s love affair with wine seems to be history, though. After six weeks of hospital sobriety, I decided to try playing the fool’s game. Whenever he asks for a glass of wine, I pour him a “cocktail” of red or white sparkling grape juice, fruit flavored water and ginger ale. He has never questioned what kind of “wine” he was drinking or noticed that he did not get the expected rush from the drink. After nine weeks of “freedom” while Charlie was in the hospital and with his daughter, I have found the confinement resulting from caring for someone with mental and physical ailments to be stifling and exhausting. Once I have some helpers in place, the job will not be so daunting. I can’t imagine what many of my readers are going through with little or no help available to give them a break from the stress and loneliness of caregiving. It only took Charlie’s daughter three weeks to realize she couldn’t do it, but she had a solution to her dilemma that many of you do not have access to. God bless you all.
His incontinence has also worsened since his hospitalization. The doctors are not sure what to blame for that; it may just be a result of his worsening dementia. So far, he is able to use a urinal at night, so I can sleep through the night without getting up 5-6 times to help him to the bathroom. The downside was the night he spilled his urinal on the newly cleaned carpet. There was a throw rug in place to catch such spills, but, as luck would have it, it overshot the rug. I’m afraid I lost my cool over that one. Charlie’s love affair with wine seems to be history, though. After six weeks of hospital sobriety, I decided to try playing the fool’s game. Whenever he asks for a glass of wine, I pour him a “cocktail” of red or white sparkling grape juice, fruit flavored water and ginger ale. He has never questioned what kind of “wine” he was drinking or noticed that he did not get the expected rush from the drink. After nine weeks of “freedom” while Charlie was in the hospital and with his daughter, I have found the confinement resulting from caring for someone with mental and physical ailments to be stifling and exhausting. Once I have some helpers in place, the job will not be so daunting. I can’t imagine what many of my readers are going through with little or no help available to give them a break from the stress and loneliness of caregiving. It only took Charlie’s daughter three weeks to realize she couldn’t do it, but she had a solution to her dilemma that many of you do not have access to. God bless you all.
Dementia Signage for the Home
20% Off
Dementia Signage for the Home
$22.75 - EZ-C Bright Green 3 Ring Binder
Friday, November 6, 2015
Dementia Poses Unique Intimacy Challenges for Caregiver Spouses
There's nothing easy about taking care of a partner or spouse with dementia.
But one of the most often overlooked challenges facing caregivers who have romantic relationships with an elder suffering from Alzheimer's or another form of dementia, is how to deal with a forever altered intimate life. "For couples dealing with dementia, there are so many losses," says Ruth Drew, Director of Family and Information Services for the Alzheimer's Association. "There's the loss of the life they had, the loss of the life they expected to have and the loss of partnership with a husband or wife."Memory-robbing illnesses are riddled with these and other losses, but one aspect that remains intact, despite a person's flagging cognitive abilities, is the need for intimacy, both physical and emotional. According to Robin Dessel, Director of Memory and Vision Care and sexual rights educator for Hebrew Home at Riverdale, the older a person gets, the more they need human affection. "There's no less want or need for camaraderie, intimacy and touch as we age," she says, adding that, "loneliness is one of the foremost reasons of depression in the elderly." The end result is that both caregivers and their loved ones are left trying to figure out how to balance their respective desires for connection and affection with a relationship that is constantly being altered by a progressive disease.
How memory loss affects sexual behavior
Dementia can have a wide-ranging impact on a person's views, reactions and behavior when it comes to sex and intimacy. An individual's inhibitions may become lowered, causing them to say or do things that are uncharacteristically crude and vulgar. This can be very startling and off-putting for friends and family who are used to interacting with people who adhere to society's unspoken sexual mores. Memory loss may also cause a person to become stuck in another time period. With Alzheimer's in particular, short-term memories are one of the first things to go. This means that a sufferer may still view themselves and their partner as being young; they won't be able to recognize their face in the mirror or the person next to them in bed. This can cause extreme anxiety and confusion, and may make intimacy nearly impossible.
When a life partner no longer remembers a life-long relationship
A person with dementia may sometimes forget the decades-long relationship they shared with their caregiver partner. It's not unheard of for a memory-impaired individual living in long-term care to seek solace in the arms of someone they met at their facility—even while they are technically still married or in a relationship with their life partner. It's a more common occurrence than one would like to think, according to Drew.
But how can a caregiving spouse cope when their partner appears to turn their back on the love they shared for decades in favor of a newly-minted relationship with someone they just met? First and foremost, Dessel urges family members to try not to view such couplings as a betrayal. A directive she freely admits is easier given than carried out. It may take months—even years—to adopt this type of pragmatic perspective.
Perhaps the most well-known example of this selfless gesture is former Supreme Court Justice Sandra Day O'Connor who, after learning that her Alzheimer's-stricken husband had formed an intimate relationship with a woman in his long-term care facility, gave the couple her blessing."Mom was thrilled that Dad was relaxed and happy and comfortable living here," said O'Conner's son, Scott in a 2007 interview with KPNX-Channel 12, a news station in Phoenix, Arizona. The key is to approach the issue with an open, and loving, heart and mind and a thorough understanding of how dementia can alter a person's sense of reality.
Coping with complicated issues by living in the now
Human beings can only live in the present moment. For people suffering from dementia, that present moment is often altered. They may not remember the past relationship they shared with their caregiver spouse, all they know is how their new paramour makes them feel. "It isn't an act of malice," says Dessel of cognitively impaired individuals who seek new relationships. "For the people in the relationship, it's real-time. They are being monogamous and bringing one another pleasure and comfort."
Dementia often dumps extreme amounts of anxiety and frustration onto the heads of its victims. Pleasure and comfort are two things that people with the disease desperately need, but often lack. That's why, as challenging as it is, caregivers and other family members should view acceptance of such unconventional couplings as an act of love. "Sometimes, loving someone else means not being selfish with your love," says Dessel. "If I had a loved one stuck in the throes of that reality, I would want to know that there was something that brought them happiness."
Sources of support for a caregiving spouse
One of caregiving's most dangerous myths is that people taking care of elderly loved ones are alone in their struggles. This misconception adds to the pain and isolation felt by family caregivers dealing with difficult issues, such as the one surrounding dementia and sex. When caring for an ailing partner Drew points out that every situation is unique and there are no "cookie cutter answers." Nothing will make the process totally pain-free, for the caregiver, or the person suffering from dementia. There are, however, common themes and experiences that can be shared from caregiver to caregiver.
Reading about a fellow caregiving spouse's experience may give you an idea of how to better handle your unique situation. When grieving the disintegration of an intimate relationship with a dementia-stricken loved one, Drew says it's essential to keep in mind that your feelings are both normal and natural. The best way to get through them is to find safe havens where you can share your emotions and talk them through with other understanding individuals.
How memory loss affects sexual behavior
Dementia can have a wide-ranging impact on a person's views, reactions and behavior when it comes to sex and intimacy. An individual's inhibitions may become lowered, causing them to say or do things that are uncharacteristically crude and vulgar. This can be very startling and off-putting for friends and family who are used to interacting with people who adhere to society's unspoken sexual mores. Memory loss may also cause a person to become stuck in another time period. With Alzheimer's in particular, short-term memories are one of the first things to go. This means that a sufferer may still view themselves and their partner as being young; they won't be able to recognize their face in the mirror or the person next to them in bed. This can cause extreme anxiety and confusion, and may make intimacy nearly impossible.
When a life partner no longer remembers a life-long relationship
A person with dementia may sometimes forget the decades-long relationship they shared with their caregiver partner. It's not unheard of for a memory-impaired individual living in long-term care to seek solace in the arms of someone they met at their facility—even while they are technically still married or in a relationship with their life partner. It's a more common occurrence than one would like to think, according to Drew.
But how can a caregiving spouse cope when their partner appears to turn their back on the love they shared for decades in favor of a newly-minted relationship with someone they just met? First and foremost, Dessel urges family members to try not to view such couplings as a betrayal. A directive she freely admits is easier given than carried out. It may take months—even years—to adopt this type of pragmatic perspective.
Perhaps the most well-known example of this selfless gesture is former Supreme Court Justice Sandra Day O'Connor who, after learning that her Alzheimer's-stricken husband had formed an intimate relationship with a woman in his long-term care facility, gave the couple her blessing."Mom was thrilled that Dad was relaxed and happy and comfortable living here," said O'Conner's son, Scott in a 2007 interview with KPNX-Channel 12, a news station in Phoenix, Arizona. The key is to approach the issue with an open, and loving, heart and mind and a thorough understanding of how dementia can alter a person's sense of reality.
Coping with complicated issues by living in the now
Human beings can only live in the present moment. For people suffering from dementia, that present moment is often altered. They may not remember the past relationship they shared with their caregiver spouse, all they know is how their new paramour makes them feel. "It isn't an act of malice," says Dessel of cognitively impaired individuals who seek new relationships. "For the people in the relationship, it's real-time. They are being monogamous and bringing one another pleasure and comfort."
Dementia often dumps extreme amounts of anxiety and frustration onto the heads of its victims. Pleasure and comfort are two things that people with the disease desperately need, but often lack. That's why, as challenging as it is, caregivers and other family members should view acceptance of such unconventional couplings as an act of love. "Sometimes, loving someone else means not being selfish with your love," says Dessel. "If I had a loved one stuck in the throes of that reality, I would want to know that there was something that brought them happiness."
Sources of support for a caregiving spouse
One of caregiving's most dangerous myths is that people taking care of elderly loved ones are alone in their struggles. This misconception adds to the pain and isolation felt by family caregivers dealing with difficult issues, such as the one surrounding dementia and sex. When caring for an ailing partner Drew points out that every situation is unique and there are no "cookie cutter answers." Nothing will make the process totally pain-free, for the caregiver, or the person suffering from dementia. There are, however, common themes and experiences that can be shared from caregiver to caregiver.
Reading about a fellow caregiving spouse's experience may give you an idea of how to better handle your unique situation. When grieving the disintegration of an intimate relationship with a dementia-stricken loved one, Drew says it's essential to keep in mind that your feelings are both normal and natural. The best way to get through them is to find safe havens where you can share your emotions and talk them through with other understanding individuals.
Dementia Signage for the Home
20% Off
Dementia Signage for the Home
$22.75 - EZ-C Bright Green 3 Ring Binder
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