5 Biggest Issues That Sabotage Family Caregivers

5 Biggest Issues That Sabotage Family Caregivers

Caring for an aging parent or other loved one in your home usually begins with the best of intentions. Over time, however, a good thing can disintegrate into a tough, tense situation. Knowing the top trouble spots can help you make changes that can delay or avoid the need to move on to out-of-home placement.

Here are five big "sore points" that undermine family caregiving -- and what to do about them:

Sore point #1: Lack of privacy

Everyone in a caregiving family needs privacy -- the freedom to exist in their own space.

Having physical privacy means having boundaries that let everyone in the house get away from 24/7 interactions. It's especially challenging in small living spaces or when the live-in elder has dementia. The disinhibition (loss of social appropriateness) that can be part of a dementia like Alzheimer's can lead a loved one to barge into bedrooms and bathrooms, for example.

Having mental privacy means being able to continue some version of long-established family time and traditions. While it's important to weave a live-in guest into family life, this needs to be balanced against the risk of alienating kids and spouses who may miss old routines or come to feel ignored.

"The time and energy of caregiving, by necessity, must be taken away from other things, especially family," says geriatric psychiatrist Ken Robbins of the University of Wisconsin-Madison, who counsels family caregivers. "This may be the biggest issue for caregivers."

Lack of privacy: Solutions

  • Make necessary home improvements to allow the live-in elder to have his or her own space, not just for sleeping but also for living: a TV set and comfortable chair, a desk, opportunities to get out of the house. Avoid making a child share a room with an elder if you can. Explore whether a parent's assets can be used to fund a modest addition to a caregiving adult child's home, rationalized as a cheaper alternative than out-of-home care.

  • Establish household rules everyone agrees on for the use of the TV, the kitchen, and other possible points of conflict. Keep in mind, though, that in the case of dementia, rules become less realistic as the disease progresses.

  • Remain conscious of maintaining one-on-one time with other family members. Your live-in elder doesn't always have to come first with you; use respite care or other relatives to supplement care.

  • Don't put vacations, school or sports events, or other previous family activities on indefinite hold.

  • Use locks and a low-key response to help manage disinhibition; explain it to kids so they're not frightened.

  • If boundary-intruding becomes overwhelming, talk to the doctor about making sure medications (like antianxiety drugs) or alcohol use aren't contributing to the problem. If aggression is the problem and it can't be managed with behavior modification or medication, realize this can be a deal-breaker for home care. Everyone in the house -- including you -- must be safe.

Sore point #2: Ignoring sleep deprivation

The common scenario: The live-in elder's sleep-wake cycle gets mixed up. This disrupts the sleep of the caregiver, who's already burning the candle at both ends to manage everyone's needs. This lack of sleep then imperils the caregiver's mental and physical health.

Sleep problems are often dismissed by caregivers for two common, misguided reasons, says geriatric psychiatrist Ken Robbins. First, they assume that poor sleep is part of aging or of dementia, and that nothing can be done about it. Second, they fear that addressing sleep problems is "selfish," only for their benefit.

In fact, resolving runaway sleep problems helps everyone. The elder whose sleep issues are addressed will experience better mood, more energy, and less pain; sleep is closely connected with all three conditions. And the caregiver who makes his or her own sleep a priority will be better able to cope with caregiving stresses and will have more energy for every part of life.

Ignoring sleep deprivation: Solutions

  • First make sure your loved one's basic "sleep hygiene" is in order: No stimulating beverages or activity late in the day. A quiet, dark room. Proper clothing for sleep (elders sometimes nod off in their day clothes). No TV or electronics used in the bedroom at night. Use of a proper, comfortable bed, not a lounge chair. (An elder may "turn in" but never actually get in bed.)

  • Next, make sure your own sleep habits are similarly healthy. That 5 p.m. coffee crutch or after-dinner drink? Not a good idea.

  • Run a medication review with a doctor to make sure no meds are interfering with sleep. Benzodiazepines used for depression and as short-term sleep aids can actually prevent sleep, Robbins says; these include drugs such as ProSom, Restoril, Xanax, and Valium.

  • If you've done everything you can to create a healthy sleep environment, discuss sleep issues with your loved one's doctor. A mixed-up sleep-wake cycle is not a normal part of aging. It is a feature of dementia (because brain changes can mess up circadian rhythms), but it can often be remedied by a good household routine and by addressing the person's fears to reduce anxiety. At last resort, medications may be prescribed to improve sleep health.

Sore point #3: Lone-soldier syndrome

Caregivers too often fall into "lone-soldier" mode thinking without even realizing it. Feeling responsible for a loved one, they assume the full burden, marching forward without regard to their own emotional needs. Eventual result: one badly wounded soldier who's not much good to anyone.

In reality, it takes a whole army to manage caregiving effectively. Failing to have emotional outlets where you can vent and "be yourself," and failing to let others share the practical burdens, results in a surefire recipe for falling down -- or giving up.

Lone-soldier syndrome: Solutions

  • Let go of old ideas that asking for help is a sign of weakness. If ever you needed other people in your life, it's now.

  • Join a caregiver support group. "I push families to join a support group," says Caring.com's Ken Robbins. "It's really hard just to talk to friends. They get tired of listening to you or have little to offer besides a pat on the back." Groups offer a level of emotional support and group-think problem solving and idea sharing that's different from what a mental health counselor provides in one-on-one sessions. To find a group, ask your doctor or your local Area Agency on Aging, or try an online group.

  • See a counselor if you're experiencing signs of depression. It's no stigma to get help; caregivers (and especially dementia caregivers) are in fact at higher risk for depression.

  • Arrange monthly or, ideally, weekly respite breaks.

Sore point #4: Not anticipating what's coming next

Like firefighters, caregivers tend to stomp out one flaring crisis after another. Unfortunately, it's an exhausting way to live and fuels the stressful feeling that your life is at the mercy of an unpredictable force in your home.

"Feeling a lack of control comes in part from a lack of knowledge about what to expect," geriatric psychiatrist Ken Robbins says. "Especially with dementia, being able to step back and see a bigger picture can help you make appropriate plans and then feel more on top of things."

Not anticipating: Solutions

  • Make contingency plans. "Live in the moment" is good advice to help you manage stress, but don't do so at the expense of a little advance planning. Once a week, devote an hour to focusing on "if this, then this" scenarios. This type of thinking helps you at least begin the process of considering where you might find more help, what kind of home modifications would help and how you'd get them done, alternative living situations, and so on.

  • Make lists of your options, or of places and people you can contact to solve potential problems common to your situation.

  • Learn as much as you can about your loved one's condition(s) and how it/they typically progress. Caregivers are sometimes reluctant to "read too far ahead" for fear they can't relate to later disease stages. They're also prey to fear of "jinxing" -- worrying that if they think about something, it might come true. Diseases are realities, not wishes. Ask your loved one's doctor to be candid about the prognosis and course of the disease, read info online, ask others who've been there.

  • If your loved one has dementia, understand the various stages, where your loved one likely is, and what to do next. Caring.com's Steps & Stages program, for example, provides weekly advice about stage-specific problems while providing peeks ahead and information about what to prepare for next.

  • Consider a support group. These help caregivers visualize future problems, as they're expressed by other group members.

Sore point #5: Overwhelming care tasks

Perhaps the most difficult home-care deal-breakers are practical matters that go beyond the caregiver's ability to manage. Chief among these: incontinence, heavy lifting, wandering behaviors in someone with dementia. Both urinary incontinence and fecal incontinence, for example, are among leading causes of nursing-home placement. A small or frail wife of a big man who needs help is another tough scenario.

"These situations often do end up where care has to be in a facility -- and that may be a good solution for everyone," psychiatrist Ken Robbins says. "Sometimes, though, there's an easy answer that allows home care to continue."

Overwhelming care tasks: Solutions

  • Be sure there's been a through physical exam to see if a problem, such as incontinence, is fixable. Adult diapers and toileting schedules, or a change in medications, may make incontinence more manageable, for example. Frequent falls and problems getting up are other physiological problems that may be treatable.

  • For behavioral issues such as wandering, learn the basic ways to address the problem (for example: floor alarms, locks, reducing anxiety) and see if they make a difference.

  • Explore whether bringing in more help, such as personal care assistants or nurse aides, can buy time and get you through difficult challenges (such as bathing and dressing).

  • Make sure you're not trying to solve the problem alone. Brainstorm possible solutions with other family members, a social worker or geriatric care manager, doctors, and friends -- including virtual ones -- who may have experienced similar issues.

  • If you've explored every option and things still aren't working, ask yourself if you're resisting out-of-home placement because of guilt. "Step back," Robbins says. "If a problem is dangerous to either one of you, ask yourself why you're being so persistent about not making a change." He often finds that when caregivers are no longer frustrated and angry with their loved ones all the time, they're better able to spend emotional energy enjoying one another again.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio

about 2 years ago, said...

Being a caregiver is a demanding job. You provide comfort and care to patients who are experiencing so many strong symptoms: the denial, anger, lashing out,depression, talkative, outbursts... As much as I try to remain stable, riding the rollercoaster of emotions with the patients leaves me drained. He has one family member who is actively in his life, the others do not have contact. It helps to read blogs on caring.com and other sites to know that I am not alone and there is no one solution to repair all that is going on with Alzheimer's dementia patients.

over 2 years ago, said...

Well I give on my long response it keeps disappearing but thank you mandibular I will call his social worker in the morning Goodluck to you

over 2 years ago, said...

I just wish I had the inspirational wisdom of all these caregivers when I was caring for my mother. She lived w/me from 2001 through 2005 (I had to take her w/me when we evacuated during Katrina.) She developed dementia and became verbally abusive during the time she lived w/me, By 2005, her physical health required her placement in a nursing home where she lived until her death in 2011. I visited every week & sometimes in between weeks. All the nursing home staff knew me by name and my cell phone number too. I took my mom out often in her wheelchair for meals (which she loved) and family events. I'm not sorry for any of the choices I made during that time, but I missed a lot of time w/my grandchildren because I was tending to my mom. Now even after these three years w/o her, I still think I could have done more ! ! !

over 2 years ago, said...

Brotherly Love 4ever, wish I could tell you it gets easier, but it's more like a rollercoaster ride. Find a good social worker who can help you find the best options for your brother and yourself. I had to put my husband in a nursing home and, despite the fact that he complains about it constantly, it's been the best thing for both of us. He can diffuse his frustration over an entire staff instead of directing it all at me and I have some semblance of a life, though I still can't do a thing without taking his needs into consideration. I felt guilty initially for putting him in the nursing home and financially it's been devastating, but I realize in hindsight that it was the right thing to do.

over 2 years ago, said...

Hi I am new to all this and completely overwhelmed I got a call in December from my sister in law telling me that my older brother (he is 54 and I'm 52) was on life support and couldn't walk or talk she said he had a heart attack and the hospital put him into immediate detox he is an alcoholic I live in Indiana they live in Arizona she bought me a ticket to fly out to help it being 2 weeks before Christmas I didn't or couldn't afford the trip out my husband and I discussed it and both agreed I needed to be there anyway to make a long story short he developed hospital acquired pneumonia and with his COPD and CHF thus almost killed him he was intubated 4 times his heart failed once and they did CPR for more than 5 minutes he has some brain damage and alcohol dementia he was in a skilled nursing facility for 3 months and has only been home for a little over a week my husband text me one day and told me not to bother coming home and said that he put all my belongings in storage and it was paid for 6 months I was totally blown away never seen it coming so now I have become my brothers caretaker and he has a lot of the things mentioned in the article his short term memory is horrible and he can barely walk which has caused a few toileting issues he doesn't want to listen to me at all and he's real demanding and hateful to too all this off his wife has decided she doesn't want to be with him anymore and has asked us to move he refuses of course and needless to say I am very uncomfortable with these things but I don't want him to go back to the nursing facility I am completely overwhelmed already and he's only been home 10 days any advice would be appreciated I am going to try some of the suggestion in the article

over 2 years ago, said...

Boisegem , you sound just like me. My family promised the moon n the sun. I canot depend on them. They haven't been there even when asked. Their life n what they want to do is more important to them. Its been two years for me caring for my df with dementia n Parkinson. My only help is my spouse when able because diabetes n neurathaphy in hands n feet so hes got bad days too. Coming to this site has been great. I have learned lots n everyone here knows what its like. There are no nearby support groups where we live. If it was I would go regularly.

almost 3 years ago, said...

Absolutely nothing. I am grateful for any information posted and this article was a great source of things to think about as I am about to take the role of being my mother's caretaker. Thank you.

almost 3 years ago, said...

I have been taking care of my sister for about I year now.it makes me cry and hurt for her.she has c.o.p.d ,blood disorder ,schizophrenic, and a lot of other things.I get know help from my family all they want to do is put her away.I am the baby out of 9 girls and my sister I take care of is the one before me I can't and want put her away she my best friend and I don't want her by her self I can do it all I just need to know how I can get paid but if I can't that's OK too because I love her and she will not be alone as long as I am alive God will find away for us to make it

almost 3 years ago, said...

Here's another reason for caregiver sabotage: The person you're caring for is never satisfied with whatever you do yet wants more and more attention. Everything is: "It's nice ...but" "It's good ...but." Followed by, "Can you do this?" "Can you get me that?" Try raising 4 children while caring for 2 mothers all under 1 roof. One of whom always oversteps when it comes to parenting our children. We have asked for her to step back and let us do things our way on numerous occasions. We have argued. Either way we get a guilt trip. "I can't say anything." "Maybe I should move out on my own, even if it's a dog house." Her actions have made the children distance themselves from her. For a time no gratitude was shown for my efforts to care for her. Now that she does acknowledge and say "Thank You", I'm to the point where I feel it's too little, too late. It sounds forced to still get what she wants. I'm done.

almost 3 years ago, said...

I am an only child. My mother lives with my family. She has Parkinson's dementia. She is very uncooperative, prone to anxiety and panic attacks. Feels she is dying all the time. Thinks I'm really mean cause I want her to stay up in the daytime. I'm very tired, depressed. Etc. My husband is not understanding and I can see that he resents her. This makes me resent him. I wish I had help. But I don't.

almost 3 years ago, said...

Boisegem, I understand completely when you say you “didn’t have the luxury of time.” My caregiving role is over; the last year became almost unbearable. (The fact that I was a daughter-in-law was significant.) It was then that I wrote a book: "What to Do about Mama?" My intention was to share information so that other caregivers might have more foresight based on the hindsight of the 35 caregivers that contributed to the writing of the book. My book has nothing to do with “having all the right answers” or “10 easy steps that make caregiving easy.” No one has all the “right answers” (even the experts) and caregiving is never easy. What I have written is not glossy, but it is honest. The problem seems to be that people who are not in caregiving situations often feel “I don’t need this yet;” current caregivers are “too busy;” and past caregivers want to “put it all behind them.” Your epiphany that you were alone in your caregiving is common. Forty percent of caregivers report problems with their siblings. But then, sixty percent must have found some level of cooperation. In my own circumstance, we had family meetings—twice—but we still proceeded based on the assumption that everyone was onboard and working from the same page. And we did receive at least some support from my husband’s siblings. What we found out, however, was that the support (of some of them) would not go beyond what was convenient enough that it would not interfere with their lives too much. It took a family mediation for begrudging change to occur, and relationships have probably suffered—permanently. Looking ahead and being prepared might or might not help. (You are correct that we cannot be in control of all the people and unforeseen situations that will develop.) Developing a care plan with a contract of commitment for all involved parties to sign-off on could well-be an exercise in futility (and yes, it should have the flexibility to evolve for those unpredictable ever-changing scenarios you mention). Nevertheless, it is something I would at least try. With the alternative being to shoulder the responsibility alone, I don’t think there is much to lose. I am glad to hear you have learned the importance of self-care (for which I was labeled as “selfish”). I am also glad you developed the ability to just “let it go.” Not an easy task, but worthwhile, indeed. In addition to my book I have a blog of the same name that can be found at: http://bgmatthewsblog.wordpress.com Your comments on my blog site are welcomed. Barbara Matthews, author What to Do about Mama?

almost 3 years ago, said...

I love your statement cgbook, "I became resentful when the "others" did not meet our expected level of involvement." So did I . . . in the beginning I was absolutely horrified when the reality of the situation truly became very clear and I had the epiphany that I was very much alone (except for my husband) in caring for our Mother. I am the oldest of three and I am the only daughter. As my husband says "we stepped up and they stepped out." No truer words have been spoken, but we had a narrow window of time to make critical decisions and we all three live in different states including my Mother at the time. We truly didn't have the luxury of time to assess and to have any foresight into the perspective future, so decisions were made, and promises were made by extended family to help in various ways if indeed we relocated Mother to our state for her care. I call these broken promises and the impact was traumatic for me as my life was the one that was impacted, the commitment of time that is required was and still is relentless. The other aspect was our Mother had a stroke and it wasn't until a year after her stroke was she indeed diagnosed with dementia, progressive dementia, as I know of no other kind, but it was no longer a matter of wait and see what deficits were permanent from her stroke it was a new paradigm. The ever changing scenario that can never be predicted in the beginning. In our family there is not shared responsibility and or a mutual understanding from the onset, we had no choice but to proceed on assumptions as we did not have a clear foresight into the exact diagnosis in the beginning. This does not dismiss the reality that many family members go through and is fairly common in our society, one sibling will step up and the others are more than willing to allow for this one person to assume all responsibility and they are okay with that situation. I truly believe that many and I am no different than many others that have lived this . . . we are full of good intention and we find out later that the road to hell is paved with good intentions, as we do not have a crystal ball to see into the future and that is probably a blessing in disguise. We do not have the ability to know that our family members, our extended family members, etc. that are all there in the beginning, will in fact, perhaps not in words, but their actions will convey that their lives become far more important than yours, for a variety of reasons, but primarily it is because the "problem" has been addressed, not by them, but by you! They are more than okay with this situation and that is the part of our so called expectations that really hurt the primary caregiver and I would also so say that my so called expectations of someone doing the right thing, such as keeping their word, being mindful of the commitment that caregiving is and the impact that it has on the primary caregiver's life is something that few really carry with them in life, and why would they? That would be the prescription for them to actually be accountable for their actions and behaviors and I have had a front row seat to the fact that few if ever really want to admit that they are selfish, self serving individuals that really do not have a problem with watching from the side lines regardless of how your life is impacted, as long as theirs is not. Pure heartbreak on every level for the caregiver that simply is trying to care for a family member. This is the reality of the family caregiver. In the beginning I had relocated Mother to an assisted living facility in our state but I was still required to oversee all of her health care, her relocation, finding the best medical care for her in our city and state, it goes on and on, very time consuming and in fact eventually we made the decision to move her into our home and that was after 18 months of paying for assisted living and all that goes along with being in a living facility, the ever revolving door of care providers, patients, policy, etc... If one thinks that a care facility deals with all aspects of care, one would be very naïve, to assume such a fallacy, it doesn't work that way, of course it depends on the care contract that you have in place, but believe me, for every single list item beside room and board, utilities, food, and or the level of care involved, there is still many other responsibilities that are required from family or the family point person. This is reality, time moves forward and others move forward with their lives and the patient and the primary caregiver are living within the level of the disease and the level of care that is required at the time. I was fortunate in the fact that as soon as we made the decision to move Mother into our home I had found a geriatric psychiatrist that we started to see on a weekly basis and I say that I was fortunate because many do not have this option, but it was truly the key to my well being and my mental health well being in truly being able to navigate through all the feelings and emotions that go along with caregiving, feelings of abandonment, and the very real fatigue that comes with this level of commitment. One of the most important aspects that I learned through two and half years of therapy, and that I would like to share is the following: Learn to ask for what you need from family and friends and then prepare yourself for not having your needs met! It sounds harsh, but no truer words have been spoken, at least in my experience. It is the first of many steps in dealing with ones expectations of others and the reality is for me as I can only speak for myself, and that would be the less expectations that you have of others the better off you are . . . one can never predict the behaviors of others, even when you have been raised together, your idea of family, and or your perceived views on what you believe that others will do, if they will be present or absent from the caring process. The reality is that once you accept the truth as it truly is that is when you can let go of any or all expectations of others, the only expectations that I have are of myself. If something good comes our way, well it is safe to say that sheer gratitude is my way, but I no longer have any expectations of anyone. I am happier for that and I no longer engage in feelings of outrage and or denial that our extended family and friends will be anything different than what they are at any given moment in time. I've learned that others can be accountable for their own behaviors and they can simply own their contribution or their lack of contribution in the caring process. I believe in "personal responsibility" and that is to say that when one assumes that there will be "shared responsibility" you truly do set yourself up for heartbreak and disappointment, it's truly not worth the added stress and all the other issues that come along with it . . . I've learned that my energy is precious and that time is transient and that I have come to know that if I do not value my contribution and simply carry on with my life and the responsibilities of my commitment to care for Mother and to have any expectations otherwise is fool hardy at best . . . you see the true character of others in situations like this . . . and it's not always pretty. However, time well spent on self care is far more productive than sitting around wishing that your family and friends would or will rise to the level of care that is required in the long term, because rarely does this ever happen. Let it go is what I've learned and be very selective as to where you are willing to assign your energy to . . . save it for the important things like making sure that your cared for, that is truly the only way.

almost 3 years ago, said...

Good comment, Boisegem. In my own experience, I became resentful when the "others" did not meet our expected level of involvement. I was unable to accept their standards because I was a daughter-in-law who quit a job to be a fulltime caregiver. "Shared responsibility" is an important topic for discussion and mutual understanding from the ONSET of the arrangement. Don't proceed on assumptions.