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8 Red Flags That an Alzheimer's Caregiver Needs a Break

Alzheimer's caregiver needs break
Caregiving — especially full-time — requires tremendous physical effort, even in the disease's early stages.

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How to tell if you're bound for burnout

Stress and burnout are the most common problems for those who care for someone with Alzheimer's disease. And, in turn, caregiver stress — the emotional strain of tending to a loved one — is one of the biggest reasons people with the disease enter nursing facilities.

Take stock of your stress level by asking yourself whether you're experiencing any of the following emotional and physical symptoms. For an even better reality check, have your partner or other loved one answer the questions for you to see what someone close to you thinks.

There's no formula for defining your stress level, but if your yes answers outnumber your no answers, or if just two or three of the categories seem to apply to you, consider taking steps to ease your situation.

 

1. A short fuse

  • Do you lose your temper easily?
  • Do you feel angry with your parent?
  • Do you feel irritable toward other family members or find yourself snapping at them?

One of the more obvious signs of caregiver stress is losing your cool easily. Frustration may particularly increase when obstacles or challenges come up, whether major or minor.

2. Emotional outbursts

  • Do you cry often or unexpectedly?
  • Do you experience feelings of despair?
  • Do you have dramatic mood swings?

It's natural to grieve as your parent's condition declines. It's also normal to feel a complicated range of emotions about having to parent your parent. But if you're increasingly emotional or feeling emotionally fragile, there may be something more going on.

Depression is a real risk for caregivers. Even if you're not clinically depressed, emotional outbursts can be an unconscious outlet for feelings of being overwhelmed.

3. Sleep problems

  • Do you have trouble falling asleep?
  • Do you have trouble staying asleep?
  • Do you wake up tired?

Caregiving -- especially full-time -- requires tremendous physical effort, even in the disease's early stages. But if your parent is sundowning, wanders, or has disrupted sleep, you lose opportunities to rest on top of the tiring work you do all day. Trouble getting to sleep or staying asleep can also be caused by stress, anxiety, and depression.

4. Significant weight change

  • Have you recently gained weight?
  • Have you recently lost weight?

For some people, stress can result in weight loss when they can't seem to find time to eat adequately or nutritiously. Anxiety often lowers the appetite as well. For others, feeling stressed or guilty leads to weight gain from mindless or emotionally triggered eating, frequent snacking, or quick but unhealthy food choices. Changes in eating and sleeping habits can also indicate depression.

If your weight has changed by more than five or ten pounds since you began caring for your parent, your body may be sending you a signal that you need help.

5. Lethargy

  • Is it difficult to get motivated to accomplish things?
  • Do you feel sluggish even after a good night's rest?
  • Is it hard to concentrate when you read or perform other mental tasks?
  • Do you feel bored?

Caring for someone with Alzheimer's involves constant vigilance and activity. So if you feel "off" instead of "on," it's hard to perform your duties adequately. It may be that you find parts of the caregiving puzzle more challenging than others -- for example, managing your parent's finances or other health concerns.

Sometimes the routines that people with Alzheimer's thrive on can become stifling to a healthy adult child. Routines do help you and your parent get through the day more easily, but they can leave you feeling like you're stuck in a monotonous rut.

6. Physical ailments

  • Do you get headaches often?
  • Have you had colds one after another?
  • Does your back or neck ache, or do you have other chronic pain
  • Have you developed high blood pressure?

Mental and emotional stress can cause physical disorders. For example, stress can lead to headaches that are more frequent, more persistent, or stronger than you're used to. Under stress, your body is in a constant state of alert, which can cause your body to produce excessive amounts of the hormone cortisol, which can have many effects. You'll also lack the time or inclination to properly take care of yourself, setting the stage for more stress. Caregivers under stress may also find themselves suffering from high blood pressure or more frequent stomachaches, cold symptoms, muscle aches, or other health problems.

7. Social isolation

  • Do you sometimes go a whole day without seeing another adult aside from your parent?
  • Have you dropped out of your usual activities to care for your parent?
  • Can you remember the last time you had a whole day to yourself?
  • Do you feel like nobody understands?
  • Do you sometimes feel that other family members don't care as much about your parent's fate as you do?

Getting out can simply be hard if you're responsible for providing care. You may feel you lack the time for your former pursuits. Your parent's changes in behavior may also make you feel embarrassed or make going out in public too onerous to attempt. Whether intentionally or not, you may become withdrawn. Unfortunately, social isolation itself contributes to stress, whereas being with others and taking time for yourself are both replenishing.

8. Complaints from family

  • Have you been accused of being a "control freak"?
  • Have you been told you don't spend enough time with your partner or children?
  • Are arguments with siblings over your parent's care on the rise?

It's a common caregiver temptation -- and mistake -- to take on the entire burden of care. It's also easy to make ourselves think that we have everything under control or that things aren't so bad. Denial is a powerful emotion. When you're in the thick of things, it can be hard to see other ways of doing it. Listening to an outsider can be healthy, even if you don't agree. What may sound like a criticism or complaint may have a nugget of truth that relates to your emotional well-being.

Alzheimer's care can become all-consuming. It's a bit like the frog who stays in the pot of water as the heat is turned up bit by bit; it doesn't realize it's in hot water until it's too late. Every Alzheimer's caregiver eventually needs assistance -- usually sooner rather than later, and usually from a variety of sources.

If you need a hand, know that plenty of forms of help are available. You can make changes in your care routine, enlist the part-time efforts of friends and family, tap into community resources, and hire assistance as well. No Alzheimer's caregiver can go it alone well. And they shouldn't try -- for their sake and their parent's.

Last revised: November 11, 2010

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Thoughts and stories from others
  1. August 2, 2013 at 11:20 am | Posted by Pam

    As I read this article, I can say with absolute honesty, I said yes to all! I am so burnt out I sometimes want to go to the woods and scream at the top of my lungs. We sold out house to move in with mom, I quit my job, now we live pay check to pay check, she gets mad at me everyday, I can't even go to my room to get a breath away from everything without her following me and saying, do I make you mad, am I bothering you? Now she doesn't even know my dads picture, and packs her suitcase everyday to go home. I am venting I know and I am so sorry! I am just so alone, everyday my husband leaves for one reason or another, I don't blame him for sure, I just feel like I am losing everything, including my mom!

    Reply

  2. August 2, 2013 at 11:13 am | Posted by Odell

    YES to all of those questions! I'm human.. I get burned out.

    Reply

  3. May 5, 2013 at 8:31 pm | Posted by Sister

    I'm reading all your wonderful thoughts for the loved ones you care for. I too am caring for my mother, but it is difficult because we have not always had a close relationship. She was very judgemental of me for most of my life, and she hurt me in so many ways. We did not live close to each other for over 40 yrs., but now she lives close by me and my husband so we can take care of her. She has been here for a year now, and she does require much attention because of her early dementia and she is also almost blind. I pray every day for patience so I can do right by her, but now that she's here and I have to face her everyday, I feel emotions I put away for many years when I didn't have to see her but for once or twice a year. I am resentful that I have to spend so much time with her now, and I don't want to feel this way. She is still somewhat independent in her own home, but totally dependent outside the home and relies on me for everything. Anyway, you all get the idea. I wish I had the love you all have for your parent. It is a strange position to be in. I'm trying, but my resentment is there. I wish I could replace it with love.

    Reply

    • August 2, 2013 at 4:00 pm | Posted by Donna

      Sister, I didn't have a close relationship with my mother either. I was far closer to my dad, my mom favored other children.The one thing my mother did though that I learned back when my dad was dying is that she may have favored her other daughters, but she knew which daughter she could count on and that was me. When times got tough, she knew I would be there no matter.Whatever happened in the past between you and your mom is in the past. Right now she needs you and she knows she can count on you. So I would take that a positive thing. I purposely moved far away from my mom so I could create my own life.Resentment does happen and even now, I will tell you that I have some resentment and anger towards 3 sisters who live their normal lives without missing a beat, but I have to take mom into every consideration. My mom is totally dependent on me and I mean totally. Some days my anger and resentment are not as bad as others, but some days I want to scream because they give me a hard time.So while you want to replace it with love, just focus on this thought. Regardless of the relationship you had in the past with your mom, you are showing her respect by being there for her now. While this might be a challenge, you are doing the right thing for her and that is something to be proud of. Your other siblings will have their own regret and guilt.Good luck and know you are taking the high road by caring for your mom.

      Reply

    • August 2, 2013 at 5:20 pm | Posted by Barbara

      Thank you for posting about those feelings of wanting to love. I too feel abnormal because I am resentful of being one of 4 children but the only one who even bothers. I am stuck with my mother who is totally dependent on me. She is totally clueless, incontinent, will not stand up even though she can. She cannot communicate at all. She has three pressure sores and has to go to wound care weekly, the other days I care for the wounds. She has no medicare or SS. Very low income so a lot of the burden for her care falls on my husband and I. For the longest time we tried to get her to work but she refused. She felt she could live on 500 a month. Now she is clueless but well taken care of. She likewise was judgemental and we did not get along well. Now my life is devoted to her and for the longest time I did not read accounts where people said they did not mind caring for their loved one. I thought that I was the only one that carried that resentment. Thanks again for making me not feel so guilty.

      Reply

  4. March 18, 2013 at 2:41 pm | Posted by sheilamariegrimes

    good post ...it took a boat load of time and persuasion to get our Mom from her home to my home over 1000 miles away. When our brother got her in the MOOD, he called and I fly up and brought her back by Amtrak. 15 months ago, seems a lifetime now. She DAILY wants to go back to her place, sees me, her caregiver now, as the reason she can't! I know I must callous to her bitterness, but sometimes it's overwhelming. The emotional part of caregiving is the challenge! I'm a nurse, I can handle the every day stuff, it's that bitterness she slpills over to me that is hurtfull! But, I feel good that I'm doing all that I can. I try to do nice things for her every day. I want her to feel safe, secure. Alzheimer's is a horrible disease. I hate she has to go through it.

    Reply

  5. March 18, 2013 at 2:31 pm | Posted by sheilamariegrimes

    I do get don't sweat the small stuff, got that in the bag. It's her constant bitterness, Doc's have fine tuned her and her meds and she still is bitter to me, not to the others who come and visit, not to my husband and son. I guess I'm her scapecoat ...I know I need to do more for myself to be able to LET IT GO! I HAVE CABIN FEVER ...WINTER'S ALMOST OVER....THANK GOODNESS!

    Reply

  6. March 18, 2013 at 2:26 pm | Posted by sheilamariegrimes

    This article hit the nail on the head....My Mom's been living with us for over a year now, and she's still bitter to me, her caregiver, like it's my fault. In January, she was in a behavior unit for 2 weeks and treated me so much better when I visited. Now, we're back to square 1, and I hate this. I see her in a better physical state since she's been with us (My husband and I, plus my son lives near helps out bunches). I attend support group meetings, I know I need to change around something so I don't burn out, I see several of the burn out flags going up for me, goodness, hard to know how to keep yourself in the sane slot!

    Reply

  7. January 31, 2013 at 9:21 am | Posted by Darlene King

    Oh how I relate. It 's not quite a year that my mom passed and I am trying not to have regrets but somedays they are so overwhelming I can hardly stand myself. I know I did everything I could for her to be happy and safe but I didn't realize how burnt out I was until now. I completely neglected everything and everyone for a good while. Thank goodness my family supported me cause I don't know how I could have handled their being resentful. One sister and I had the biggest part of caring for Momma because our other siblings live out of town. And we both did a lot of complaining to each other. It got to a point that all I could see was the worst of things and was angry a lot. I didn't want anyone to make a suggestion or a comment about her care. I just bottled it all up. I had all the classic burn out signs and never knew to reach out for help for myself. This I regret so much so I could have been able to fully enjoy her last years with us. Don't sweat the small stuff and don't try to be all things to everyone get help.

    Reply

  8. January 31, 2013 at 4:10 am | Posted by Ellen Samson

    You wanted to care for your elderly parent or relative but you are leading a busy life that caring for them on a day to day basis can be so overwhelming!We manage all the players rendering services to an older person, offering an assurance and peace of mind to their adult childrenThis is why the Geriatric Care Management profession is becoming a growing business. Acting as the surrogate family - daughter or son, we take care of the parents or love ones and reporting status to the family.We, Geriatric Care Managers do the following:Conduct care-planning assessments to identify needs, problems and eligibility for assistance; Conduct family mediation,meetings and crisis intervention especially for seniors who are suffering from Dementia;Screen, arrange, and supervise or monitor in-home help and other services;Review financial, legal, or medical issues; Offer referrals to specialists to avoid future problems and to conserve assets;Act as a liaison to families at a distance;Make sure things are going well and alerting families of problems;Assist with moving their clients to or from a retirement complex, assisted living facility, rehabilitation facility or nursing home;Provide client and family education and advocacy;Offer counseling and support.On call 24-hrsIt is a very exhausting job but very fulfilling. Almost all my mornings and weekends are spent talking to daughters and sons who just don't know how to deal with Mom and Dad who are refusing help despite the obvious safety risks due to their denial that they need help. There is this tricky issue of safety against independence.

    Reply

    • August 2, 2013 at 3:54 pm | Posted by Donna

      Ellen,I am sorry but I am not into organizations or homes when it comes to the elderly.Here is one of my problems with organizations, most of the employees either volunteer or get paid a salary for that time period, but most of the employees have not cared for a parent 24/7.Nothing irritates me more than individuals, doctors, nurses, or anyone that wants to tell me what I need to do when it comes to caring for an aging parent. Unless someone has been a caregiver on a 24/7 basis in the same home, not living down the street or long distance, then they have no idea what it is like to watch your parent or loved one change or know what goes on inside their head or even understands the stress of the situation.I am sorry but only those that spend 24/7 with their loved one has a grasp on what has to be done.I know how to research and read information, I have been doing it while working on a doctoral degree in Psychology. So I have a good grasp on many things and I find that most organizations have employees that spend so many hours with Alzheimer's patients but have no clue about the 24/7 duties.I promised my mom no nursing home and I dislike government involvement, plus I am highly educated so many people do not like me, but my mom's doctors all love me and think what we are doing with mom is great. We even had a newly retired doctor pay us a compliment in our care for mom. I do things for my mom that no agency would do and I refuse to let obstacles get in my way.So please do not take offense to my words, but take them as a chance to get a better understanding of how some caregivers feel. I wish doctors, nurses and working professionals spent more time learning from care givers because we could them a thing or two.

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  9. January 30, 2013 at 8:16 pm | Posted by Lisa

    Hi Judi:I sympathize with you, I went through it with my mom. I have 6 siblings that were too busy to help with care and finances as for my dad he felt it was his time to do the things he always wanted to do with no cares in the world, don't get me wrong he helped with the financial part and that was it. Amazing being married to my mother for 47 years. I was married with 6 step children and one of my own and working. It wasnt easy at all! I prayed everynight for the lord to me strength, love and most of all patient. Yes, I felt I was abandon and obligated to care for my mother. Finally, one evening on my mom final stage she mutter my name and said I always loved you,. That's when I felt content and surprise that had some type of feeling of what I was going through. I thank God cause after that day my husband and my children took the steps to help me out with bathing, feeding and etc. without them knowing that I was burning out as a care taker. Sometimes, now she has passed away those words that she had mutter were that a miracle was taking place. It wasn't easy it almost deminsh my marriage, but I realize sometimes we need time ourselves and have no fear to ask for help. There resources available out there in your community you need to do some research and praise yourself as I did "We are doing the best that we can". My thoughts and prayers.

    Reply

  10. January 30, 2013 at 12:55 pm | Posted by Dee

    My husband is the one struggling with Alzheimer's, We are lucky that he has a since of humor not always but most of the time. We still go through hard times I just have to adjust to what mood he is able to handle.. I really believe that the best thing for husband and wife it to stay intimate with each other. It helps both and not always easy to change from caregiver to lover. We went to Hyperbaric Oxygen Therapy and this had made a Huge difference..If you are in beginning stages I really recommend both..

    Reply

  11. January 30, 2013 at 11:52 am | Posted by Isabel

    Alzheimer's is brutal and the Government provides zero financial or social support. I have literally wanted to leave the house, abandon my parent and never come back! I meet all 8 criteria for a burn out, clearly I'm headed for a nervous breakdown. Thank God for his hospice nurse, she comes talks to me, even brings me food and drink sometimes. I have a sibling who claims that "she has to work and doesn't have my kind of time." Can you beleive that! I have to work too, but right now I am not so I can care for our dad and everything is falling apart as a result. I pray, and I pray and I pray - for this country to wake up and do something about Alzheimers! Not everyone has great insurances that pay for nursing homes or home care aides to come - all my dad's pays for is a hospice CNA once a day - that's it, the rest is on me! I am tired.

    Reply

    • August 2, 2013 at 3:46 pm | Posted by Donna

      Isabel,It does get tiring and I find that siblings are the greatest problem. I have one sibling right here in town where mom lives and she can't get up to see her mom for an hour.I am not a fan of nursing homes, social workers, or government agencies, so we prefer to take care of mom. But the family dynamics is the problem. And there really is no solution for family dynamics.

      Reply

  12. January 30, 2013 at 10:52 am | Posted by Elaine Lambert

    My husband is in the later stages of Altzheimers. He also has COPD. It is hard for the caretaker to be around it 24/7. We all need a break. I try to go out to lunch with friends and do things with my kids and grandson. I get so depressed when I have nothing to do but worry about what tomorrow will bring. I realize that I must take care of my self so I can take care of my husband. I know he day will come that I will be living alone and I need to be prepared to as much as possible when the time comes.

    Reply

  13. January 30, 2013 at 10:39 am | Posted by Linda Isaacs

    I was a nurse for 30 years, so I thought it was just the right and natural thing to do.....to care for my parents. What I didn't realize was how unprepared I was to deal with the rigors of old age, disease and mental decline. Now that they are both gone, I feel great guilt over how much better I could have done the job. Through the help of the Alzheimer's Association, for whom I now volunteer for, I have come to realize that I am not alone and we are all in the same boat. I strongly encourage all caregivers to research like crazy and go to their local support groups. I wish I had!

    Reply

    • January 30, 2013 at 4:26 pm | Posted by Sue

      Oh lord, I wish I had too, Linda. My mother has been gone for a year (almost to the day) and I'm only now starting to crawl out of a large pit of heavy-duty issues. It never occured to me to research or seek supports. I was too busy walking the razor's edge between my ailing parent and my resentful husband. "A day to myself"? What the heck was that? Everyone and anyone, whether a caregiver or not, heed Linda's wise advice, even if you know you're strong and 'don't need it'.

      Reply

    • January 30, 2013 at 8:20 pm | Posted by Lisa

      Linda:Your right, I feel the same way. This is why now I'm involved in the Gerontology program I'm about to graduate in Maywith my certicate,and it's informative program I wish I knew about the resources that were available and how to obtain them. We all have to do some research to strive in caring for our love ones.

      Reply

    • March 18, 2013 at 2:47 pm | Posted by sheilamariegrimes

      I am thankful for the local Alzheimer's Support Group Meetings. Just being able to listen to others in similar circumstances is comforting. Deciding what works for another, might help me, is helpful. Sometimes there are many, sometimes just a few, but I always get a lift!

      Reply

    • August 2, 2013 at 5:49 pm | Posted by Barbara

      Alzheimer's Assn has meetings, but during work hours. My boss is very understanding and allows me to work around my mothers schedule. Even so, it is overwhelming. It seems like there is never time for anything but her. It would be nice to be able to talk to someone who understands the burden and doesn't think that even though she is "sick" I'm still lucky to have my mother. I don't have my mother, I have a lady who sees me as the enemy and fights everything I try to do for her, whether its changing her diaper or feeding her. I feel like after 10 years I can't take much more.

      Reply

  14. January 4, 2013 at 5:23 pm | Posted by Judy Good

    I could write a book. All I'm gonna say is do the best you can while you can and forgive yourself when you've done all you can do and it's time for your loved one to go to a facility. Hardest decision I ever made but I know it was the right one. My other thought was suicide and I knew that wasn't the right choice.

    Reply

    • January 30, 2013 at 10:27 am | Posted by Robin

      I feel like you were talking for me...I love my Aunt so much but in order to have her live with us I had to neglect my family and myself...Yes its also stressful but we are all safe now. I try so hard to remember....There's no guilt in caretaking.

      Reply

  15. November 27, 2010 at 9:02 pm | Posted by judi byler

    In the year two thousand I lost both my parents. Before they passed, the year was very demanding and mind boggling. I always kept in my mind that if things were turned around they would take care of me. Dad broke his hip and demanded around the clock care. The nursing home about killed him and the sorry hosp about finished the job when he was taken to a wonderful hospital that brought him back from the brink of death. Mom had dementia and was yelling at the nurses and especially hated one that I had to take her to the emc. room for help. They sent her to Atlanta where they gave her too much Aricept and from there she developed two blood clots. It was hard, I kept the phone by me and many times would just go to sleep and have to get up to go to the hosp. or somewhere I was needed. My husband was recooping from heart surgery so it was not easy. I did the best I knew and would do it again in a heartbeat. Yes I did get burned out but here ten years later I thank the Lord that I had the strength to do everything I knew to do. I miss them and feel blessed that I could at least do something to help them

    Reply

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