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Caregivers Get Sad, Too

Your loved one with aphasia isn’t the only person feeling sad and frustrated. Caregivers get sad, too. In fact, some get downright depressed. The Family Caregiver Alliance puts caregiver depression prevalence at a conservative 20% of all caregivers (which is double the rate of the general population), and the Mayo Clinic created a guide specifically for depression stemming from caregiving.

How can you ensure that you don’t burn out while helping a loved one through aphasia?

Causes for Caregiver Depression

Beyond fears of the unknown and the immense pressure on the caregiver to make continual decisions on another person’s behalf, caregiving is exhausting. You’re out of your routine and taking second place in your own life. You may not be eating well, exercising, or getting enough sleep. Your future has changed, and things you counted on may no longer be possible. If your daily communication partner is the person with aphasia, you may be missing your confidante. You may feel angry that things are progressing slowly, or frustrated with how long — and how many hoops you need to jump through — in order to get answers.

Caregiver sadness and depression is real and experiencing it doesn’t mean that you’re weak. It means that you’re human and affected by the world around you. What counts is whether or not you treat it or dismiss it.

Get Support

The first step in treating caregiver depression is to make sure it doesn’t happen in the first place. Lean heavily on your dream team and make sure you have adequate support so that all responsibilities don’t fall squarely on your shoulders.

Next, find a good therapist so you have a release valve for your feelings. Even if you save it up and only get to speak to them once a week, that time can be an invaluable hour, allowing you space to express your fears and regroup. Therapy is important because you can say anything without feeling as if you’re burdening a friend or family member with your feelings. Therapists are trained to carry those heavy emotional loads. They aren’t personally invested in the experience, so they have the distance to help you make sound decisions.

Create Your Own Family

There is the family we are born into and there is the family we create along the way, and being a caregiver opens you up to the possibility of bringing other caregivers into your fold. The other caregivers you meet at the hospital or speech therapy clinic form a like-experienced support group of other people who “get” it.

Even if you have other people — friends and family members — to talk to, there is something special about speaking about a difficult experience with someone who is going through the same thing at the same time. Just knowing you’re not alone can go a long way in releasing some of the stress. So strike up that conversation in the waiting room; that person sitting next to you may just become fictive kin.

Write it Out

If you don’t have people to talk to, release the stress by writing in a journal. Or open the voice memo app on your phone, go someplace quiet for a few minutes (the front seat of the car in the parking lot works), and just talk. Tell yourself how hard this is, how scared you are, and how frustrated you feel.

Writing it out in a journal has the added benefit of being a time capsule for those emotions. It can be empowering to look back on your words and know that you don’t feel that same way anymore. It can help you remember that you won’t have your current feelings forever, too.

Cry, Cry, Cry

Our body has a natural way of releasing pressure: crying. If your body didn’t want to you use it, it wouldn’t have this function. So take advantage of it!

Let yourself have an all-out, puffy-eye-giving crying session. Go somewhere private and really wail. Multitask and have a good cry in the shower so you can wash your face at the same time.

Crying isn’t a sign of weakness. Crying is a natural way to deal with stress and tension. Use it liberally to feel better.

We’re rolling out four posts directly for caregivers for Aphasia Awareness Month. Jump back to read the first one, second one, or third one because this is the last one in the series.

Image: Kelly Sikkema via Unsplash

Comments

20 Comments

  • Anonymous
    June 26, 2018 at 7:07 pm

    It is so difficult to hold it all together. Not only am I caretaker, I am breadwinner, healthcare advocate, social security disability insurance paperwork survivor… I do have a great deal of support, but in the end it is all on me.

  • faith mutevu
    July 12, 2018 at 12:21 am

    Thankyou for addressing this issue.I feel
    overwhelmed a lot of times and have no one to talk to.

  • Susan
    August 17, 2018 at 7:33 pm

    I have been caregiver for my spouse whom has PPA and FTD for five years and more. Don’t know where to turn. Sick of doing everything. My support system is minimal. When will this end? Not fair!

  • Anonymous
    August 30, 2018 at 8:30 am

    This article has reminded me that I need to get some counselling. I have my partner, who is in her 40s, to support – emotionally, financially and practically, and our two children – one is 8, the other a teenager. Sometimes it’s almost like being a single parent.

  • Anonymous
    August 30, 2018 at 9:05 am

    Thank you for encouraging me to reach out. As a retired nurse I tend to feel as though I have to do it all (and fix it) by myself. It is really hard taking over my husband’s role and increasing mine to encompass the caregiving piece. Lately, I have been struggling with the lack of family support, which initially was so good. When my husband had a hemorrhagic stroke as a result of a procedure our family was awesome, but now they are all too busy with their own lives and at a physical distance from us. I have a select few wonderful friends who have become “family “ and I could not do without them. I tend to want to protect them from being over used and don’t reach out enough. So, thank you again for your support of all of us who are living a new and often difficult life.

  • T Reilly
    August 30, 2018 at 9:14 am

    Keep hoping that things will get better; Prayer helps and grown children’s assistance is priceless. Home health caregivers come three times for a few hours. It all adds up.

  • carol Miller-Hall
    August 30, 2018 at 9:28 am

    I am a caregiver….my 58 year husband has had global aphasia since his stroke almost 10 years ago. I think I have aged an extra 10 years. NOT ENOUGH SUPPORT FOR CAREGIVERS…we should receive financial support same as a disability, perhaps we could afford that much needed break that we are all supposed to take. Not everyone has family around to help. Yes….the endless decisions and life planning and then there is single parenting and all the issues that come with that.

  • Dave
    August 30, 2018 at 10:20 am

    Excellent series. Written by a person who truly “gets it”. No mention of embracing the “new normal”. That’s good because the new normal isn’t much fun. My wife has severe stroke/ aphasia, Everything outlined in this series played-out. We’re 5 years in now, and still young (50’s). Looking back, I self-learned what was outlined in this series…. with many mistakes along the way. Could’ve used this back then. The fourth in the series is spot-on. In my experience, situational depression requires a change in situation to improve. My remedy , for now, is to live by distraction. Finding every chance I can to get out and away from the responsibilities. It’s not the life I want, but I’m muddling through it. The truly hard part is knowing that I can escape on occasion and my wife cannot.

  • Barbara Bofkin
    August 30, 2018 at 10:47 am

    Would love to find a care/support group in london UK 🇬🇧

  • Terri McIntyre
    August 30, 2018 at 11:36 am

    It’s been 14 months now as a caregiver after my spouse had his stroke leaving him with expressive Aphasia. It’s so hard, I cried everyday for the first year. I am blessed because I can see small improvements, I feel for others that progress is going the opposite way. As hard as it is I push myself to look at the positives, I pray without ceasing not just for myself but all affected by Aphasia and caregivers everywhere. I agree with the fact its hard to be now making all the decisions about everything, dealing with personality changes, financial struggles and losing part or for some communication with their life partner. Remembering to be grateful for even the small victories is key. Thank you for this article. Definitely gives some options for us. Take care everyone.

  • Cadee
    August 30, 2018 at 1:57 pm

    I have been a caregiver for the past 17 years. It has taken its toll on me. My adult sons spend very little time with their father and don’t seem to comprehend the toll it has taken on me. I have always been the one “to take care of everything in the family” and they see this as one more task that Mom needs to take care of. One of my sons spent three days with my husband for the first time in 17 years so that I can go away with my daughter-in-law and grandson. My retirement is not what I expected it to be. I know that my husband is frustrated because in his head he knows what he wants to say, but what comes out of his mouth is no where near the words in his head. Now he will say one word and think that I can create the entire sentence for him! I am exhausted. My role in this family is to take care of everyone and NO ONE thinks I should have help. This is my life.

  • Jess
    August 30, 2018 at 2:51 pm

    My husband had his stroke one year and three months ago. As we did not have any doctors or medical insurance apart from Medicare part B which we are paying a hefty penalty for, it has been all down to me to get help. No close family or friends help, just me searching. We did not get to see any doctors until four months after his stroke (which I had no clue about when it happened). Finally found out he had a major stroke and has Afib. Got him on meds. For his heart but no help with the brain. I finally found the Aphasia group and we attend meetings for communication and language. As he has no physical disability it seems like people think there is nothing wrong. But as you all know, it’s a daily, hourly, minute by minute need to continually check up on all the little and big things. Most of the time I cope but sometimes I feel really alone. I found the Calm App and community online. The meditation and being able to talk about things have helped a lot. I truly feel for all you caregivers who are alone and struggling. May we all find some peace and support. Thank you.

  • Gillian Rafferty
    August 30, 2018 at 3:16 pm

    Barbara I agree with you. My husband has PPA and we live in Kent U.K. There are Alzheimer’s support groups near me but my husband doesn’t like going as he can’t join in conversation,s though he would like to. it would be good to join a group that understand the specific problems involved. Where both, myself and my husband could meet others who are dealing with the same challenges.

  • Stan
    August 30, 2018 at 7:30 pm

    Thanks for this opportunity to share and very much appreciated reading the other folks comments- most of which I totally associate with and understand.
    My wife had her massive stroke a few years back at 52- as I’m 9 years older I pray every day to stay healthy- for her
    If nothing else this struggle to help her has made life mean so much more to me-
    One last comment- ( of course there are too many more to fit in here) I am so grateful to have the love of my life still but I do miss her so much.

  • AnonymousRockland
    August 31, 2018 at 9:54 am

    My husband had a stroke a year ago. He has no family and mine was supportive initially but as others have said, they have jobs and children and other obligations so the support has fallen away over time.
    I only have time and insurance coverage for quarterly visits to a therapist and others I think may be getting tired of hearing my woes so I now just say things are status quo when asked how he is doing. This kind human being, my husband did nothing to deserve this awful situation. It’s cruel to watch. I wish he was at peace. Enough suffering.

  • Anonymous
    September 1, 2018 at 1:52 pm

    THe big thing isn’t depression. It is the sadness of seeing a loved one slip away as the disease progresses. Fatigue from being a 24/7 caregiver. Being unable to do more than alleviate the symptoms. Trying bring joy the sufferer.

  • Anonymous
    September 3, 2018 at 9:16 am

    Caringbridge has helped me it allows me to express updates and cut back on phone calls. Our marriage is a beautiful one. However a yr ago my perfectly healthy happy hardworking husband had this nightmare that changed our lives. I am a psychotherapist, people come to me and here I’m powerless and feel alone . His family has not shown one ounce of support for us at all. One “ just can’t handle seeing him like this” , really ? If he has to handle it so does anyone who loves him. My family lives far, there are times I think we should move back there, but I realize they have their own lives and it would be a burden . Our son comes every week to see his dad . But he works 40

  • Rebecca
    September 3, 2018 at 10:01 am

    My husband has aphasia. He has fought it for 10 years and I so admire his determination. He so wants to continue to hunt and fish and keep things as much as “normal” as he can to our original way of life. Fishing is great … I just do not have the energy to take him on my own. Hunting … should be out of the question by now. Yet we still try. Crazy … probably. As his caregiver, I am beyond fatigue. I feel so desperately isolated. And alone. I am sure he does too. And over the years we have run so many friends away. Not intentionally … we just need a lot of help. Help is rarely available. Everyone is dealing with their own problems. I pray for all who suffer this or any other injury, illness. I appreciate the articles about Caregivers. Perhaps it will provide a little insight to others.

  • Richard
    September 4, 2018 at 7:59 pm

    Mostly the caregiver is just plain tired. Listening to the aphasia victim is hard work. Others consider the aphasian to be an idiot because she can’t speak., or talk about her right in front of her as if she didn’t hear and understand. Seeing a loved one gradually dragged down and nothing to medical science can do about it. How to do you comfort her when she cry about the things that are making you cry yourself. My wife has apraxia too so there are stairs to go down, coking helping her eat, hygiene etc. etc. It grinds you down. 🙂 :X

  • Natalie
    April 10, 2019 at 11:23 am

    It’s been 12 years since my husband was mugged and suffered a traumatic brain injury that left him with Aphasia. Although he looks normal, it is a huge struggle for me and me alone. I feel like I am his brain and I am his right hand. No one knows because I don’t complain and I don’t want pity but I am drowning more and more every year as my children get older (6,10,15). He is a wonderful husband and I wouldn’t change him for anything but it’s overwhelming. Like one person mentioned above, it’s hard making all the adult decisions. I worry about something happening to me because he would have no one to understand him and step in every minute of the day to complete his sentence or even his thought. It’s almost as if I am alone but I have him physically there to love me but not contribute to being an adult.

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