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“I Want to Go Home”

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Dear Candid Caregiver:
My dad is having around-the-clock home care, which was his choice early on when he was diagnosed with Alzheimer’s disease. He’s in the later stages now, but he keeps telling his caregivers, including me when I take a shift, that he wants to go home. I read an article that you wrote where you said that asking to go home didn’t necessarily mean any particular home, but your comments were directed toward the idea of someone living in a nursing home. Since Dad is in the home where he lived for nearly 40 years, you’d think he’d feel some comfort from that. In fact, that’s one reason we’ve continued to stretch the finances to keep all of this care in his home. What could he possibly want that we aren’t delivering?

– Sad and Bewildered

Dear Sad and Bewildered:
I’m so sorry that after all you’ve been doing your dad is still asking this painful question. It’s enough to bring the strongest caregiver to tears. Yet, your dad can’t help it, which you seem to understand.

Whether a person living with Alzheimer’s has lived in a home for a lifetime or makes a transition to a new home or a care home isn’t likely to make much difference when it comes to this question.

Expert theories about what the person really means when they go through this phase have shifted through the years, but current thinking leans toward underlying feelings. It’s believed that the person is looking for a feeling a safety and comfort in a more general sense rather than longing for a physical place, which is something that I alluded to in the earlier article.

More simply put, the word home is standing in for the need to be reassured that they are cared for and safe.  In the end, each person with Alzheimer’s is different from others more than they are the same, however I think that I’d consider this a legitimate interpretation.

Considering the effort and expense that you’ve gone to in order to keep your dad in his home, I’m sure that this theory is a little hard to take, so I want to reassure you that your dad has benefited from staying in his home and will continue to do so. You haven’t wasted effort and money. My point is just that, for this particular issue, where he lives isn’t what the question is really about.

If you let go of thinking that he should understand where he is, you needn’t rack your brain to figure out what home your dad is referring to. Just recognize that for some reason, likely one that has nothing to do with your caregiving or that of his aides, he is feeling lost and insecure. That’s part of living with dementia.

The solution, which I acknowledge is a poor offering because you will still have to listen to his plaintive plea, is to remain calm yourself and then try to understand the meaning behind your dad’s words at any particular time. This could be slightly different each time, but in essence he probably needs reassurance that he will be taken care of even in his confused state.

Your body language and tone of voice can make a huge difference, so try to keep yourself under control by reminding yourself that his emotional pain isn’t your fault.

Just try to comfort him in any way that you can. Touch him by holding his hand or putting your arm around him, unless he resists this, of course. Covering him with blankets, quilts, or lap robes can provide a feeling of  security if this is something that he’s enjoyed in the past. A live pet or a stuffed animal can also be calming, as can a warm (not hot) drink if he can swallow without stress.

Some people respond well if you ask them to tell you about home, while some will get upset. Again, your dad’s reaction to this could be different every time, so be prepared to try different methods without blaming yourself for “failing.” Try one approach if it sometimes works and if it doesn’t, move on.

If comforting alone doesn’t help, try distracting him by suggesting that you watch a DVD of an old musical performance or a movie he enjoys. Some people have taken distraction to such a degree that they’ve gotten their loved one in a car and driven around the block so that they can then come back “home.” If this is something that you can do it may be worth a try, though suggesting that you’ll have a light lunch or some hot chocolate before you go out to the car may make the trip unnecessary because he’ll likely move to another topic even before you leave.

The main thing is to avoid trying to explain, use logic, or argue in any way. Saying, “But Dad, you are home,” will nearly always backfire because he’ll insist that he’s not home, and he’s right because his need for security hasn’t been satisfied.

Whatever you do, Sad and Bewildered, expect that this question will be asked again and again. Be assured that it has nothing to do with what you are doing, not doing, or even where your dad lives. Best wishes, my friend. This is a difficult phase.

The Candid Caregiver
The Candid Caregiver (TCC) is a safe place for all caregivers, of any condition area or caregiving level, to go for candid yet professional guidance. Questions will be answered, tough topics will be discussed, and the caregivers will ultimately have a place where they, themselves, feel cared for. No topics are off the table. Ask your questions and share your stories on social media using the hashtag #TheCandidCaregiver.

TCC’s lead caregiver and author is Carol Bradley Bursack, a veteran family caregiver with more than two decades of experience.


Caregiving: Could Your Body Language Be Making Your Loved One Anxious?

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Dear Candid Caregiver: My parents were always open about their long-term plans for retirement, saying that they’ve worked hard and retirement was going to be the payoff. Travel was huge on the horizon. Now, my dad has been diagnosed with mixed dementia, which, in his case, means Alzheimer’s and possibly Lewy body dementia, so their dreams are pretty much canceled. Mom is, for the most part, a good caregiver, but she’s resentful about what happened, and why wouldn’t she be? She has a right to these feelings except that her resentment shows through to Dad through her body language as well the tone of her voice, and from my observation, this increases Dad’s anxiety.

I don’t blame Mom because the whole thing is awful, but doing anything that increases Dad’s anxiety is a bad idea for him as well as those around him. The more Mom’s resentment about their failed dreams shows, the more anxious and difficult Dad gets. The harder Dad is to care for, the more Mom’s body language and tone of voice show how on edge she is. I’m not perfect, I know, so I’m trying not to judge, but I believe that I have more distance and, for that reason, more clarity, than my mom. How do I approach Mom without upsetting her more than she already is? – Sad but Tense

Dear Sad but Tense: I’m so sorry about what’s happened, not only to your dad but to your whole family. Generally, when I hear about ruined retirement plans, the letter comes from a spouse, so you provide an observant perspective that we can all learn from.

I’m certain that your mom doesn’t have any idea that her grief, her anger, and her stress over what happened is showing through in a way that it could negatively impact your dad, but you are entirely right.

Since you are big enough to admit that you sometimes let your body language speak in ways that you’d rather keep under wraps, you could start there. Tell your mom that you’ve read where caregivers often show stress through their body language and tone of voice. Admit that you’ve caught yourself displaying stressed or hurried behavior from time to time when you help your dad get dressed or do other daily tasks, and let her know that you want to change this.

Explain that these articles emphasize the fact that hurried or jerky motions on the part of the caregiver can stress people with cognitive disorders, and sometimes make them feel anxious. They can even feel that they are a disappointment, which is probably an issue already with someone like your dad. He doesn’t need these feelings reinforced.

My purpose here, of course, is that by highlighting your own shortcomings in this way, you won’t come across as blaming your mom. This, in turn, will keep things as smooth as possible, which could avoid issues between you and your mom that might increase her stress, which – you guessed it – could come across to your dad as more anger. Whew!

What if diplomacy doesn’t work?

That happens, of course. Some people are unable to consider their own behavior unless they are directly called on it. If your best attempt to use your own actions as an example doesn’t help your mom think about her own possible contribution to your dad’s anxiety, and try to improve in this area, then you’ll need to do more.

If this is the case, try to talk with your mom away from the house in a relaxed setting (if possible). You could take her out to coffee or lunch. The idea is to talk with her away from your dad so that he isn’t involved.

In this more private setting, tell her that you understand that she’s got to be incredibly stressed and you can’t even imagine how she does everything that she does. Tell her what a wonderful caregiver she is. Then mention the body language and tone of voice in the same way that you did earlier. Remind her again that you, too, have problems with this. That can limit her feelings of you being a know-it-all.

You can suggest steps that could help lower her own stress such as hiring help for a few hours a day as well as by joining a support group, either online or in person. Seeing a counselor, if she’s open, could also benefit both your mom and your dad since this would allow your mom to work through her completely understandable sadness and anger at their situation. You might mention that spousal caregivers have their unique pain, so taking steps to deal with this through support groups and/or counseling could help her regain her equilibrium.

Caregivers are only human. Neither you nor your mom will ever be perfect caregivers, so understanding this – and helping her understand this – will benefit both of you.

Touching base with other caregivers can help relieve unearned guilt in this area, too.

I want to stress that both of you could also benefit from practicing self-care, so you and your mom could, perhaps, share ways that you are doing this.

Best wishes as you help your mom take care of your dad. It’s a difficult family journey, but it does have its rewards.

The Candid Caregiver
The Candid Caregiver (TCC) is a safe place for all caregivers, of any condition area or caregiving level, to go for candid yet professional guidance. Questions will be answered, tough topics will be discussed, and the caregivers will ultimately have a place where they, themselves, feel cared for. No topics are off the table. Ask your questions and share your stories on social media using the hashtag #TheCandidCaregiver.

TCC’s lead caregiver and author is Carol Bradley Bursack, a veteran family caregiver with more than two decades of experience.


The Reality of Suddenly Becoming a Caregiver

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One phone call turned my world upside down.

It was Jan. 29, 2006, and the then-president of ABC News was on the phone, explaining that my journalist husband, Bob Woodruff, had been hit by a roadside bomb in Iraq where he was covering the war for ABC’s World News Tonight. Bob had suffered a severe traumatic brain injury (TBI) and was being rushed into battlefield surgery, where doctors would remove half of his skull to save his life. It was unclear whether he would make it through the procedure.

When the phone rang, I was in Disney World with our four young children. Like many, I was baptized by fire into the world of caregiving. I had no warning, no training and no previous experience. I was terrified.

For the next 35 days, Bob lay in a medically induced coma at the Bethesda Naval Hospital in Bethesda, Md. [now called the Walter Reed National Military Medical Center]. As his body physically healed, his mind refused to wake up. My initial hopeful spirit had finally given way to heartbreaking reality. I forced myself to tour an acute care nursing home because doctors had gently been telling me this was Bob’s next step — unless he could wake up and begin the grueling process of rehabilitation.

The next day, just like a made-for-TV movie script, Bob woke up on his own, elated, speaking gibberish and gradually becoming aware of the extent of his injuries. Now the real hard work would begin: the long, slow slog of recovery after brain injury and the roller-coaster ride of the caregiver.

The medical staff and others had prepared me to deal with Bob’s depression and sadness, the common reaction to patients coming to grips with loss in the wake of traumatic and life-changing events or diagnoses. In addition to my own broken heart, I wondered if I’d be able to carry the weight of my husband’s sorrow and preserve the emotional well-being of my children. Could I parent them through the shoals of family trauma without permanently staining their worldview?

Worried about such an uncertain future, I decided to ask Bob directly if he was feeling depressed. Three days after he had emerged from the coma, I took his hand and bent down near his face in the hospital bed, trying not to look at the sunken place on his skull where the bone flap was gone.

“Honey, do you feel cheated?” I asked gingerly. “It would be normal if you did. You just took over the anchor chair from Peter Jennings, and you’ve barely had time to enjoy the new role. Are you asking yourself, ‘Why me?’ “

Bob’s answer set the tone for how I would move forward, for the lens through which I would try to view the immediate future and everything that would come after.

“Why not me?” he answered, with no trace of bitterness. “I’m no different than the 25-year-old soldier from Kansas. Just because I’m on TV doesn’t make me more special than anyone else.”
I was stunned — in a good way. Bob’s response and his ability to try to look at everything from a place of positivity was what allowed me to pick myself up that day and vow to do the best I could as a caregiver.

Anyone who has been through “the bad thing” knows that not every day can be viewed with Doris Day-like optimism. There were good stretches and then periods of what I called “payback” — two steps forward and sometimes three back. There were moments of grief and also secretive soul-crushing sob fests, and there was disappointment, regret and anger. That would be the stuff of real life.

This is my first column as a regular contributor to AARP, where I will be sharing my caregiving experiences and those of others. I am humbled by the stories of people who care for loved ones and friends through many different aspects of hardship and adversity. They are the true heroes to me, especially the thousands of military families who endure injury, illness and loss in service to their country.

I certainly don’t pretend to have all the answers. And our family’s story is just one of millions out there, each one important to remind us how we all get through — by combining our strengths, doling out helpful advice and feeling connected to a larger caring community.

And while we all can’t adopt the “Why not me?” attitude every single day, my attempts to hold that thought on the bad days was a kind of armor, a mental talisman when I felt myself slipping under. It’s those moments of grace that can pull us through when we feel simultaneously overwhelmed and grateful as caregivers.

So tell me: What were your hardest days of caregiving and how did you get through them?

Lee Woodruff is a caregiver, speaker and the author of three books, including the best-seller, In an Instant. She and her husband, Bob, are cofounders of the Bob Woodruff Foundation, which assists injured service members and their families.


The Unpaid Caregiver Crisis is Landing on Employers’ Doorsteps

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Scott Williams knows firsthand what it is like to support a sick relative. But even after spending 20 years tending to his ailing mother, he didn’t consider himself a caregiver.

“She suffered from multiple chronic conditions, but I never considered myself a caregiver,” he says. “I just thought I was a son who loved his mom.”

Williams, who is vice president and head of global patient advocacy and strategic partnerships at the biopharmaceutical company EMD Serono, realized that because he didn’t think of himself as a caregiver, he wasn’t able to take advantage of the benefit offerings his company had in place for these workers.

“Until I really started to think about it, I didn’t realize how burned out I really was,” Williams says. “I was in that sandwich generation, which is a situation that many caregivers find themselves in sometimes.”

Williams dilemma is not uncommon. There are 43 million Americans currently tending to a family member in need, according to data from LIMRA. AARP estimates that caring for a loved one can cost close to $7,000 out of pocket.

It is also both physically and emotionally taxing — 57% of caregivers need medical care or support for a mental health condition, according to an Embracing Carers survey. About 55% of caregivers say their own physical health has diminished, 54% say they don’t have time to tend to their own medical needs and 47% report feeling depressed.

The caregiving crisis puts employers in a unique position to offer benefits, policies and resources that can ease some of this stress. Indeed, there are some employers that already stepped up. For example, Starbucks launched a new caregiver benefit last year. Amgen and Brinker International, use digital tools to offer caregiving benefits to their workers.

Regardless, the need for employer provided backup child, adult and senior care options is still largely unmet. Only 4% of employers offer backup child care services and only 2% offer backup elder care, according to data from the Society for Human Resource Management.

The breakdown of communication between the company and the worker may be keeping the majority of employees from accessing the assistance they need. If employers ignore this issue or simply fail to communicate with employees, it can end up becoming a burden that costs the company money or result in the loss of a worker.

But there are some steps employers can take. The first is to identify the responsibilities of the family caregiver so that employers can better address their needs. One of the biggest responsibilities caregivers face is the amount of time they have to spend transporting loved ones, says Ellen Kelsay, chief strategy officer for the National Business Group on Health citing recent data on the subject. These employees often have to leave work early, come in late or take off to get an ill family member to their doctor’s appointments.

“The financial impact is considerable, many of these employees are paying out of their own pocket to support the medical care of a loved one. So there is financial assistance that they need,” Kelsay says. “When you think about the impact on the employee, they [struggle from a] physical, mental and emotional wellbeing perspective.”

About half of unpaid caregivers work full time outside of their home and many have to take leaves of absence or cut back their work hours due to the demands of caring for a family member, LIMRA research shows. A significant portion of employees had to stop working in order to better care for their loved one — about 22% say they voluntarily quit their jobs, 18% had their employment terminated and 13% chose to retire early.

Unlimited PTO, remote work, shared sick time and an employee resource group are just a few offerings employers can offer staff, Williams says. For instance, EMD Serono created an employee resource group for caregivers, a peer to peer network where employers can find dedicated resources, while also having an exchange with colleagues who are going through similar situations.

But there is still more that can be done, Williams says. Training managers to be more understanding of an employee’s needs can go a long way toward bridging the gap. Another option companies should consider is enhancing employee assistance programs to include caregivers, he adds.

“One of the things we see employers doing that can really help is being able to raise the visibility of [the available] resources,” Williams says. “To really ensure that whether you’re a new employee or an established employee in an unpaid caregiving situation that you have access to them.”

Amanda Schiavo
Associate Editor, SourceMedia