The untold cost of caregiving: We all have a role to play

There is a memory from my medical school days that has stuck with me for decades. It’s one I’ve shared often and may have played a hand in my professional path. I came home for a medical school break and was enjoying a visit with my grandparents. We were sitting around the dining room table as we had many times, but this time was different. My grandfather’s Alzheimer’s disease symptoms had progressed since my last visit. He was a silent bystander to our family conversation that day, until, without warning, he slammed his fist on table with such force that everything shook. He stood up, agitated and upset, and ran out the front door. I followed him as he wandered the neighborhood. Eventually, I was able to bring him back inside. This was a marked change from the quiet, gentle man I had known. Although I would learn more about the progression of Alzheimer’s disease symptoms, that day, I was sure of one thing. I turned to my grandmother and said, “you can’t do this by yourself anymore.” She had been caring for my grandfather all on her own for many years with little support. Shortly after, my grandfather was moved to long-term care.

Nearly half of caregivers in the U.S. who provide care for an older adult do so for someone living with Alzheimer's disease or dementia. As America ages, these numbers are expected to grow exponentially. During my decades of experience working with people who live with Alzheimer’s disease I’ve seen first-hand the detrimental impact this condition has on the family and caregivers. The impact is especially hard on the “sandwich generation,” a term describing people who are navigating the trifecta of caring for a loved one, juggling a career, and the pressures of parenting children of their own. The complexities of care, financial burden, and human toll it takes for someone to care for people suffering from Alzheimer’s disease are staggering. Worse, these challenges go largely unnoticed and unsupported by resources in our communities.

Half of sandwich generation caregivers caring for loved ones with Alzheimer’s disease or dementia feel as though they are drowning and unprepared for the role, according to a new survey conducted by Wakefield Research and sponsored by Otsuka America Pharmaceutical. Nearly two-thirds (65%) of caregivers surveyed say that their role is more stressful than any job they’ve held in the past. They have paid a heavy price, with caregiving taking a toll on nearly every aspect of their lives, putting their finances, mental health, and jobs on the line. The impact is even greater among sandwich generation caregivers with 72% reporting they have had to cut back on spending for necessities such as food, tapping into retirement or personal savings, or cut back on their own medical care expenses.

Despite the heavy load they are carrying, two thirds (66%) of Alzheimer’s disease and dementia caregivers report feeling undervalued by society, believing society values career over caregiving.

Alzheimer’s disease and dementia caregivers shoulder a heavy burden, struggling to manage it all, every day. Undeniably, being a family caregiver is not a responsibility that is chosen; it is circumstance and obligation that most, if not all, family caregivers, are thrust into. But that doesn’t make them any less worthy of support for the vital role they play. There are, of course, silver linings. Mixed in with the stress of this role, the majority (55%) of caregivers surveyed describe their role as the most important responsibility they’ve ever had. Seeing these numbers and reflecting on my own experiences, it’s clear family caregivers are lacking tangible, practical resources to help navigate hard moments. One in nine Americans aged 65 and older has Alzheimer’s disease, and millions of families in our country will be affected by Alzheimer’s disease at one point. Alzheimer’s disease and dementia are still not approached with the same priority and urgency as our physical health. Working at a company that recognizes the challenging and critical role family caregivers play for people living with Alzheimer’s disease has affirmed for me what’s possible when we all work together to raise awareness for the needs of caregivers. In November, Otsuka announced a corporate caregiver commitment, deepening the company’s work in advocating for visibility and support of caregivers, providing tangible tools to address their needs and to make a meaningful impact in their lives. The company is also introducing caregiver benefits to Otsuka employees. It has prompted me to think about what could be achieved if all come together to address the caregiver crisis, which will continue to grow as the population ages.

We have the potential to improve the future for caregivers if we all do our part. Caregivers shouldn’t have to live in crisis to do the most vital tasks in our society. My hope is our government officials will use their platforms to ensure caregivers are protected and supported. My ask of my peers in the medical community and fellow leaders in health care is that we commit to work together to ignite greater awareness for the gaps in support that have left Alzheimer’s disease caregivers in our country struggling to care for their loved one, often at the expense of their health. As for the rest of us, we all know a caregiver. The next time you speak to them, ask them how they’re doing. Ask them what they’re going through. The more we understand their challenges and needs, the more we can understand where they need support and the value they bring.

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Researchers Find New Method to Measure Cognitive Impairment, Dementia

This article, " Health-Deficit Accumulation Affects Risk for Mild Cognitive Impairment, Dementia," was originally published in NeurologyLive.

Using a frailty index score could enable clinicians to identify patients at risk for cognitive dysfunction, making it an important marker for prognostic value.

Newly published data suggests health-deficit accumulation, specifically among older Americans, affects the likelihood of progressive cognitive impairment, as well as the likelihood of cognitive improvement independent of the APOE ε4 allele.

Lead author David D. Ward, PhD, postdoctoral fellow, geriatric medicine research, Centre for Health Care of the Elderly, Nova Scotia Healthy Authority, and colleagues calculated a frailty index score using the deficit-accumulation approach in participants aged 50 years and older from the National Alzheimer’s Coordinating Center (NACC).

Among those not cognitively impaired (NCI; n = 9773), each 0.1 increment increase in score were associated with a higher risk of developing mild cognitive impairment (MCI) and a higher risk of developing dementia.

In total, there were 14,490 participants in the study with a mean age of 72.2 years. In the MCI subsample (n = 4717) at baseline, there was a higher degree of frailty that was associated with a lower probability of being reclassified as NCI from MCI, a higher risk of returning to MCI in those who were reclassified as NCI, and a higher risk of progressing to dementia.

"We conclude that frailty is a key risk factor for age-related cognitive dysfunction and dementia, representing both a target for interventions aimed at the prevention of age-related cognitive impairment and possible prognostic marker among those who have MCI,” the authors wrote.

The score is a health-state measure, incorporating information from multiple physiological systems, and closely reflects an individual’s risk for adverse health events and mortality independently of chronological age. A higher frailty index score indicated accumulation of more age-related health deficits while approximating biological age.

The researchers aimed to detail the dynamic nature of cognitive functioning by calculating the likelihood of transitions between cognitive states in both directions over a 12-month period. Decline of cognitive function was considered forward transition, whereas improvement of cognitive functioning was defined as backwards transition.

The investigators also assessed whether frailty index score and APOE ε4 allele carrier status exerted independent or interactive effects on cognitive-state transition probabilities.

They found no statistically significant interactions between these variables for any transition in the NCI subsample. However, in the MCI subsample, the association of the frailty index score and the risk of progressing to dementia was significantly weaker in those carrying an APOE ε4 allele than in non-carriers (interaction hazard risk [HR], 0.88; 95% CI, 0.80–0.97).

There were no meaningful differences in these associations when participants whose race was other than white were removed from the analytical sample. Notably, associations of the frailty index score with transition probabilities did not differ significantly between men and women.

Over 12 months, NCI subsample participants maintained their prior state 43,086 times (90.6%) and transitioned between states 4491 times (9.4%), 3086 (68.7%) of which were transitions between cognitive states, with 1405 (31.3%) transitions to death. Of the cognitive-state transitions in the NCI subsample, 80.9% were forward transitions, and 19.1% were backward transitions. In the MCI subsample, 70.5% were forward compared to 29.5% who experienced backwards transition.

"This work supports an emerging conceptualization of late-onset dementia as a complex outcome of aging that often is intimately related to an individual’s general health, as well as genetic risk factors,” the authors wrote.

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Particulate Matter Increases Future Risk of Alzheimer Disease

Progressive brain atrophy known to be predictive of Alzheimer disease (AD) is linked to late-life exposure to particulate matter with aerodynamic diameters <2.5-μm (PM2.5), according to new research.

Longitudinal analyses showed that for each interquartile range (IQR) increase (IQR, 2.82- μg/m3) of PM2.5, the associated risk of developing AD increased by 24% (hazard ratio [HR], 1.24; 95% CI, 1.14–1.34) over a 5-year period, as assessed by increased AD pattern similarity (AD-PS) scores. This association remained within levels of PM2.5 below US regulatory standards (<12-μg/m3).

Principal author Diana Younan, PhD, research associate, University of Southern California, stated in a related release that the “findings have important public health implications because not only did we find brain shrinkage in women exposed to the highest levels of PM2.5 pollution but we also found it in women exposed to levels lower than those that the EPA considers safe.”

Younan and colleagues investigated data from 1365 women free of dementia with a mean age of 77.9 years (standard deviation [SD], 2.7) that participated in the WHIMS Magnetic Resonance Imaging (WHIMS MRI) study.

MRI data at baseline and after 5 years was investigated. AD-PS scores—which have been shown to be associated with known risk factors of AD and poor cognitive function—were developed by a supervised machine learning algorithm by comparison of MRI data from the AD Neuroimaging Initiative of gray matter atrophy in areas vulnerable to AD such as the amygdala, hippocampus, thalamus, midbrain, parahippocampal gyrus, and inferior temporal lobe areas.

In longitudinal analysis, IQR-increments were significantly associated with a 0.031 (β = 0.031; 95% CI, 0.017–0.046) increase in AD-PS score.

In fully adjusted models the association was 0.026 (95% CI, 0.009–0.043), which correlates to the 24% increase of AD risk. This association remained after adjusting for socio-demographics, lifestyle, and clinical characteristics including cerebrovascular factors such as white matter lesion volume and stroke, challenging previous studies that have proposed a cerebrovascular mechanism of PM2.5 damage leading to brain atrophy.

Instead, Younan and colleagues favor the theorized mechanism that PM2.5 directly contributes to the neurodegenerative process of dementia via a neurotoxic effect on brain structure.

Sensitivity analyses confirmed the positive association between PM2.5 and AD-PS score after adjusting for baseline AD-PS scores. No association was seen between PM2.5 and baseline AD-PS score in cross sectional analyses (β = –0.004; 95% CI, –0.019 to 0.011).

Previous analyses of WHIMS MRI include region-of-interest analyses that showed residence in areas with higher PM2.5 was associated with smaller total brain and white matter volumes, and that residing in places with >12-μg/m3 concentrations of PM2.5 increased the risk of global cognitive decline by 81% and all-cause dementia by 92%.

Younan and colleagues call for future studies “to fully investigate whether the neurodegenerative effects of late-life exposures to airborne particles may be contributed by or independent of cerebrovascular damage before or during late life...to replicate these results and to thoroughly explore other measures of cerebrovascular damage that may not be captured by white matter lesions and were not explored in our study (e.g., microbleeds; lacunar infarcts).”

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5 Tips for Communicating with Someone with Alzheimer’s

Did you know that 5.5 million Americans are currently living with Alzheimer’s disease? Communicating with someone diagnosed with Alzheimer’s can be challenging and often create frustration. However, communication is possible if you remain patient, avoid distractions, avoid pointing out mistakes, utilize nonverbal communication, and keep it simple. Read about these tips in more detail below.

5 Tips to Communicate Effectively

Be Patient

When communicating with someone with Alzheimer’s, make sure to prepare yourself before entering into a conversation. You need to be remain patient and know that it may become challenging. Do not raise your voice, show stress, or demonstrate frustration. Allow your loved one to take their time. Remember to listen and do not interrupt.

Avoid Distractions

Take away the distractions by having the conversation away from competing sights and sounds. You can do this by using a quiet room in the house (like a den or bedroom) so the attention is focused on you and not the T.V., the cars driving by, or other background noise. Doing so will at least create a clear pathway for talking.

Avoid Pointing Out Mistakes

You can easily get off topic or lose someone’s attention if you point out a mistake or correct something he or she said. Avoid this mistake and avoid arguing with your loved one.

Utilize Nonverbal Communication

Communication uses both verbal and nonverbal messaging. Try to use visual and nonverbal cues (i.e. hand gestures, facial expressions, etc.) to get your message across.

Keep the Conversation Simple

Depending on where the disease is in its progression, you may need to keep your sentences short and to the point. Eventually, as it progresses, you may need to keep your questions to yes or no answers. In addition, breakdown larger concepts into smaller, easier-to-understand talking points. For example, if you need to discuss a new medication – consider all of the items you need to communicate: the name of the medication, its purpose, why it’s happening, when it needs to be taken, how often, etc. Break down each of this and take time messaging it.

Remember not to take any issues or comments said personally. By being patient and showing respect to your loved one you can set the tone for the conversation.

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It's Never Over

By Karen M.

A year ago today was the last time I heard my husband say my name coherently. It was a year ago I sat with him and wondered how much longer I could go on. I thought about him struggling to speak, shuffling as he walked, wearing a catheter and briefs, starting to have trouble feeding himself and selfishly I was worried about finances and impacts on me and the kids and wondered how long it would be before Alzheimer’s Disease eventually took him. I figured I still had lots of time.

I found out the heartbreaking answer just a few days later when I got the call he was “actively passing”.

I have learned so much in the past year. I have learned about friendships. I have learned about empathy and kindness and I have also learned about selflessness and selfishness. I have learned about the kind of loss you think you understand until you actually live it. I have felt an emptiness inside of me that I didn’t know could exist or was possible. I felt a perpetual sadness that there is nothing in this world to compare to or which can lighten. The only relief is sleep, but then you wake up. Guilt is so ingrained in me I can’t remember a time it wasn’t part of my being. I have felt helpless as I watched my kids mourn their father. I have buried my husband and yet I still cry for him, long for him, ache for him and miss him. Terribly. I thought I had cried as much as possible before he died. I was wrong. My eyes now have dark eyelids and seem to be constantly swollen.

Yes, a year ago I was struggling to be a caregiver and a mother and somehow keep myself sane. Now I am struggling to recall all of the memories I am terrified of losing and a few I should probably forget. And now I face the challenge of a future alone, without Jim and starting all over. It is like being fresh out of college and trying to decide a path that will best lead me forward to whatever my future holds. My passion is Alzheimer’s Advocacy and education. That is what I do best and I what I want to do. It just doesn’t pay all the bills.

I look at photos and watch videos. I see our love and our excitement together. I see our hopefulness in a future laid out before us. I see Jim as the disease progresses and it all triggers the same feelings that crept in each time he showed how much he was changing. So I stop looking and I stop watching. Then I start to feel a void. A new guilt. Trying to move on. Trying to stop the pain and misery. And I go back to the darkness. There are good moments. The kids and some friends have made sure of this. But there is always that nagging feeling that something just isn’t as it is supposed to be. Something always seems to be missing….

And yet, we were lucky. Most Alzheimer’s patients aren’t able to communicate so late in the game. They usually can’t remember the loved ones who visit or care for them. A year ago Jim said my name. He knew his name. He still wanted to watch the kids play ball (another regret which equals guilt: not taking him because I was worried about the cold….if I had only known) and he could still hug me and tell me he loved me. He loved me. To have had someone intimately know you and still love you with the intensity and the depth that man did me is something you just don’t get over. It is rare, it is special and I cannot express my sorrow for no longer having that kind of support and unwavering adoration. It only comes along once in a lifetime and there have been moments I wonder what I have to look forward to. It seems it will all be a wash from here on out. Yes, we were so lucky in so many ways. The support from our community. The friends who rallied round. The strength we gave each other. But here I am a year later and I am just as lost as I was on that fateful day I got that dreaded call.

I have the kids to watch grow and to parent and to comfort along the way. But what am I supposed to say as they watch their friends interact with their Dads and my children don’t have one? They had a great one and he wanted nothing more than to live long enough to be there for their childhoods and young adult lives. That was the one thing that would make him tear up and cry. Losing his children. Them losing him. Jim was such an amazing man and even better father, it is such a loss for them on so many, many levels. I can only fill in so much. He was so handy and smart and funny and witty and dropped everything to do something with them. They are sadly missing out.

I couldn’t save him. I couldn’t keep him from falling victim to this terrible death. I know it wasn’t my fault, but as anyone who has cared for and loved someone who has lost a battle to a disease they fought against with all their being, there is guilt which never strays far away. And there is guilt for not knowing what was just around the corner. And guilt for losing patience. And guilt for not fulfilling bucket lists and guilt for worrying about the wrong things and not having the right conversation at the right time and not being ready and not knowing that the very conversation you are recording and taking for granted would be the last. For falling asleep when you should have been awake, even if it was 4 am. For letting go but wanting deep down inside to hold on forever. Being in a hurry to get home to fix dinner, or do the laundry or relax….there is plenty of time later. But then you don’t really feel like it and there are few dinners that are made and even fewer that taste good. There is no more relaxing and now you only do laundry for three. And you only cook for three. You only travel as three and only need three tickets for a show. And you now have all the “guy” chores to do and the last thing you ever feel like doing is getting out of bed and doing any of it. When you finally decide you want to do something, either the kids have plans with friends or your friends have plans with their husbands. I haven’t braved a movie solo or dinner alone. It will happen, I just haven’t yet. I will. I know I will. I have to. One day soon. It is my life. My new normal. I can go hiking by myself and travel unescorted and do whatever I want to do, just sans a partner. It takes some getting used to and I haven’t quite wrapped my head around it yet. But I will.

Mourning is a process. A long, slow process. No matter how much you want to get over it, how much time you had to prepare, how ready you thought you would be….the heart and mind aren’t always simpatico and they both run at their own leisure.

A year ago I could go visit Jim. And bring his laundry home to wash. And the kids could come with me and see him, talk to him, tell him about their day and what they were doing. They could play catch with him or sit outside in the rocking chairs. We could see his smile and know he was still with us. Even if it wasn’t the life he wanted. Even if is wasn’t quite the same Jim. And then I know I am so very selfish for wishing another day with him. I really don’t want that because he didn’t. I want the old Jim. Before the disease. The one I fell in love with. But the sick Jim, the one who left me once and for all, he taught me more than anyone ever has. He taught me grace and acceptance and tenacity and patience and the real meaning of love. He showed me each and every day. I am forever a changed woman and forever grateful.

So now I am alone with the kids and no longer have the worry of his care. Or what is coming around the bend. Or what his wishes might be. Or when will it all be over. It is never over. Alzheimer’s takes them, but leaves us with the loss and pain that sticks around for a long, long time.

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FINDING STRENGTH IN CAREGIVING BY KAMARIA MOORE

Guest blogger: Kamaria Moore

Hi everyone,


My name is Kamaria Moore and I am the primary caregiver for my mother, Mary. She was diagnosed with early onset Alzheimers at 58, when I was 28. She is now 59 years old and I’m 31. My mom was previously living independently in a three-story family home, but recently has been hospitalized. Doctors have been unable to determine her diagnosis, so we’re in a state of limbo where we don’t really know how long she will be there and what her functioning capacity will be afterwards. I am spending as much time with her as I can at the hospital, and I take care of all health care, living logistics, and fiscal responsibilities.


My husband and I just got married on May 7th and celebrated our honeymoon in Puerto Rico. I work for the state of Massachusetts. As difficult as it was not having my mother to assist with wedding planning, it was even more difficult not having her at my wedding because of her sudden hospitalization. The juxtaposition of one of the happiest days of my life with serious concern over my mother’s health was incredibly difficult for me, but we still managed to have an awesome time and showed her all sorts of pictures and videos afterwards.The Massachusetts/New Hampshire Alzheimer’s Association chapter has been incredibly helpful to me, and was instrumental in helping me line up initial supports when we received the diagnosis. One example was a support group for young people whose parents have early onset. I attended this group pretty regularly for about a year, but I often felt like I shouldn’t say anything because my experience was so different from everyone’s. I was the only person of color, and most people’s parents had either a husband or wife to assist in the caregiving. Because of this, their experience was mostly about enjoying their role as caregiver, and being able to enjoy the time spent with their parent. While I appreciated everyone’s shared experience, I felt like I couldn’t honestly express the difficulties I had with being a caregiver. This feeling led me to want to share my own story, which led me to this profile.


During this time, I have recognized my own strength. I have cared for both my parents off and on since 2007, and during this time have been able to obtain and keep full time employment, maintain healthy relationships with friends and family, purchase a home and get married. I am becoming someone who can balance life really well, including balancing care for mom with care for self. I’m strong enough to be there for her and know that it is ok to want my own life, although it is still something I struggle with often. I have learned that it’s okay to maintain my own life and happiness in order to be the best caregiver possible.


I’ve been able to use resources to fill in the gaps. My mom has really found a place in church so my cousins take her and it gives me a break. I’ve learned through caregiving that my strengths are logistics, so I take care of those, and my family takes care of providing her a social and emotional output. She attends an elder service day program which provides her with social interaction and support. She still maintains a few hobbies, including coloring which she is really proud to show off!


If there’s anything I hope comes from this profile, it’s that someone out there sees it and sees a reflection of themselves and their stories in it, and for just a second feels a little bit better.

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How To Manage Alzheimer’s Symptoms: Hallucinations and Suspicion

Hallucinations can be the result of failing senses. Maintaining consistency and calmness in the environment can help reduce hallucinations. Also, violent movies or television can contribute to paranoia, so avoid letting the patient watch disturbing programs.
When hallucinations or illusions do occur:

• Don’t argue about what is real and what is fantasy.
• Respond to the emotional content of what the person is saying, rather than to the factual/fictional content.
• Seek professional advice if you are concerned about this problem. Medications can sometimes help to reduce hallucinations.

 

Alzheimer’s and suspicion

Confusion and the loss of memory can also cause Alzheimer’s patients to become suspicious of those around them, sometimes accusing their caretakers of theft, betrayal, or some other improper behavior.

• Offer a simple answer to any accusations, but don’t argue or try to convince them their suspicions are unfounded.
• Distract the patient with another activity, such as going for a walk, or by changing the subject.
• If suspicions of theft are focused on a particular object that is frequently mislaid, such as a wallet for example, try keeping a duplicate item on hand to quickly allay the patient’s fears.

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Applying for Veterans Benefits: Tips for Caregivers and Spouses

"What are the VA benefits for veterans and their caregivers, and how do I know if my loved one is eligible?"

Believe it or not, this is the most common question caregivers ask Debbie Burak, founder of veteranaid.org, about applying for veterans benefits. As the daughter of a WWII veteran, Burak is intimately familiar with the challenges that caregivers face when dealing with the VA. For nine years, she looked after parents who never had enough money to pay for their care needs. It was only after years of scraping together every dollar they could find that Burak discovered her parents had been entitled to approximately $165,000 in VA benefits that they'd never received.

"I'll never forget the expression on Mom's face when she realized the money she desperately needed was never going to come," Burak laments. The experience, as devastating as it was, inspired her to advocate for aging and ailing veterans, and to create a website that provides information for veterans and their caregivers.

Confusion about applying for veterans benefits Eligibility may be the key question for many caregivers, but there are several other areas of confusion and misinformation that could significantly impact the finances of people seeking to obtain Veterans benefits:

The VA doesn't recognize Power of Attorney (POA): "A POA is worthless to the VA," says Burak. "It has no standing; no merit." This revelation often comes as a shock to caregivers who are used to hearing about the necessity of getting a POA as part of planning ahead for elderly care. In order to manage a legally incompetent veteran's financial affairs, an individual must be officially appointed as the veteran's fiduciary, according to Burak.

You can expedite a VA application: The VA has specific rules in place to expedite the applications of people age 90 and older. If your loved one is in this age group, make sure that the VA office that's handling their application is aware of this.

 You don't have to be ill to get Aid & Attendance: One little-known element of the VA program is that when a veteran turns 65 they are considered 100 percent disabled in the eyes of the VA. This means that they could be eligible for the lowest level of Aid & Attendance assistance, even if they have no major health conditions.

Benefits get cut off when a veteran dies: If a veteran dies before their spouse, any Veteran Aid & Attendance Improved Pension benefits being received by the couple will immediately cease. "People are just devastated to learn this because they're grieving and trying to make arrangements, and now they get to sit down and play the VA shell game all over again," she says. The "shell game" Burak is referring to is the one that requires the surviving spouse to submit a completely new application to the VA to get their benefits reinstated. Along with a death certificate, the surviving spouse (or their caregiver) must supply additional information and documents, including the deceased spouse's discharge papers; their marriage certificate; information regarding their income, assets and expenses; a physician's statement that details the surviving spouse's medical diagnosis and whether or not they can take care of themselves; and a statement from their long-term care provider (assisted living community, home care agency, etc.) that details their new cost of care information. Even if these documents have already been submitted to the VA, they all must be re-sent after a veteran dies. According to Burak, the average time to award a widow's pension is 10-12 months after it's been submitted, so it's important to start this process as soon as possible after a veteran passes.

What happens when you call the VA's 1-800 number: Burak has another tip for caregivers who call the VA to check on a loved one's application status. Make sure you're talking to the local VA office that services the area in which your loved one lives. Be aware that the 1-800 number for the VA automatically routes a caller to the VA office that's nearest to them. For long-distance caregivers, this is most likely not the same office that's in charge of their loved one's account. If the VA office they're directed to is not the same one that's handling their loved one's application, the caregiver won't be able to obtain any information since VA offices are not allowed to pull files on beneficiaries or applicants who do not live in their area.

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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.

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