Years ago I conducted workshops and seminars to physicians at the Boston University School of Medicine. The well-attended meetings were about “Who Takes Care of the Physician?” This subject continues to warrant attention, however I’ve realized that nurses, aides, home health care providers and our reliable family members, also need to be cared for. They too need tools for their own self-care during these stressful times.
Of course the primary focus is on the sick or post operative patient, but little attention is paid to the family members that are in the trenches day in and day out with their loved ones. The responsibilities thrust upon the spouses and children can be not only daunting, but disorienting 
and exhausting.
Effects on Family Members
- Fear of the unknown; fear that the family member may never be the same
- Guilt over whether there might have been something you could have done to prevent your family member’s diagnosis
- Helplessness; feeling that there is nothing you can do to really make a difference
- Anxiety over whether the recovery will be sound and complete as possible
- Depression over family member’s inability to live their life the way she used to before the diagnosis
- Frustration about one’s own sleep deprivation, lack of control of one’s own time, and the litany of demands needed on the part of the patient – and shame with feeling the need to take care of the self when needed by the impaired loved one
Ways For Family Members to Manage Successfully while Care Taking:
- Know that recovery involves a partnership of the patient and caretaker.
- Share your feelings of frustration with a friend, loved one or, if appropriate, the person you are caring for.
- Share your positive feelings too as in reminding the patient that you love them and are willing to do all that you can to help them.
- Get an education. This will help you be more patient, compassionate, and understanding. It will also prepare you for any physical or psychological changes your family member may have to endure.
- If you are not the primary caretaker make your visits short, positive and upbeat.
- Keeping in touch with friends and other family members enables you to get the morale and emotional support needed.
- Make time for yourself. Build in the coverage you need so that you can take breaks when needed to rejuvenate and care for your own physical and psychological needs. Lose the guilt. The timeout will make you a more effective and loving caretaker.
When have you had to be a caretaker? What psychological impact did the role have on you?
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p.s. I dropped your name on Gina's post, Barb. ;)
thank you so much Lisa, that helps a lot. I know he tried to blame me for so much stuff, but like I told all of his family and mine none of that added up to a divorce. I do realize it's his needs, it just hurts so bad to think how many years he's
Valuable advice here, thank you. When my husband was dying, Hospice was fabulous at taking care of me as well as taking care of him. I got support for the logistical challenges — someone to bathe him, for example,and suggestions to keep a baby monitor in the room so I could hear signs of trouble and still be able to move about the house freely – and sessions with a social worker who understood my grief, fear, and fatigue. I’ve heard that agencies for critical illnesses such as Alzheimer’s disease also provide support for caregivers.
Dear Joan, Sounds like you got wonderful support when your husband was dying. There are certainly services available, but all too often people go at it alone. Accessing care often requires a considerable amount of homework. Besides health care, providers tapping into one’s social network can also make a profound difference emotionally.
Hi-
My husband coming home from Rehab around November. Everyday it’s on my mine how and what will I do. He is almost confine to the bed. I am praying he will be able to improve with Rehab. I notice you said it requires considerable amount of homework. We have two insurance neither pays for long term nor regular home services. They pay for home health care for someone to come in and check blood pressure, physcial therapy, speach therapy and Rehab. I need help with bathing getting him up into a chair. This is so draining he is in Rehab but calls me constantly to come down. He had open heart surgery, was down a little to longer and lost his moblility I are praying that Rehab will help. I am still unable to rest he constantly calls wanting me to visit. Please where do to start,I want to be prepared.
Other wise I have no ideal what I will do. Thanks for allowing me to share .
I suggest you find out everything he needs to do once he gets home. Ask them to write everything down. Ask lots of questions and see if there is any way for you to get additional services, if it is too much to manage. The Rehab should definitely help as should the home health care and physical therapy. Visit him at Rehab and ask questions there. See if they can help you with additional home health care, like bathing him and lifting him into a chair. You are entitled to getting all of the necessary answers.
I am a caregiver to my mother (91 yrs old) who is in the moderate stages of Alzheimer’s. We live in a tiny, country town in LA where there aren’t many services available. This is my mother’s home town and we came from the bay area of California where I was born and raised. We have been here a year and a half, but the list for in-home services is over 2 years long, so I am handling her care alone. When we first got to LA in 2008, my sister shared the responsibility, but about a year ago she found a boyfriend and now spends as much time as possible with him, neglecting responsibilities here at home. For the most part, Mom is still getting around pretty good with the help of a cane or walker. I shower her, but she dresses herself, puts on her own jewelry, combs her own hair, etc. She spends almost every waking hour doing “find-a-word” puzzles, sitting on the couch. The main focus on her disability is her lack of and dwindling memory and lately some hearing loss.
I feel that I am handling her care very well. I have reached out on this site previously for tips and was astonished by all the fantastic responses with suggestions, opinions, etc. Right now, I think the biggest thing is that I get very frustrated…and for alot of reasons. I guess my first frustration lies in the fact that I get no time for me, personally. In the house, it’s just the two of us. If I want to go to the store, out for fast-food or anything else, I have to take her with me. For awhile, she didn’t mind staying home by herself for an hour or less, so I could go to WalMart or roam around other stores by myself. Now, anytime I grab my keys, she wants to ride with me. She seems to be under the impression that I will leave her and possibly never come back. I do my very best to talk with her and assure her that I would never do that, but she still says it sometimes and when she doesn’t say it, I can tell by her actions that she feels it. Sometimes I can just go down the hall to the bathroom and she starts yelling my name and asking where I am and if I plan to return to the living room where she is.
The next thing is that I get frustrated with repeating myself over and over and over again. I was told by her doctor to call her name or get her attention before I talk to her and I try, but I’ll be damned if she still doesn’t say, “Huh?” or “What did you say?” at least 80% of the time. It drives me crazy!!! I am constantly told by professionals and others to just have patience and I do… Some have mentioned putting her in a senior living facility, or assisted living facility, but I just can’t. It’s my mother. She gave me life and took care of me when I couldn’t take care of myself and I feel I have to do the same for her.
In this little town, there are no support groups, so I get my most support right here on Vibrant Nation and the friends and relatives in my life that live in California (2,000+ miles away). I wish I could get a break sometimes, but who would do this job when there isn’t anyone around to help? I can not count on my sister for anything. She is very selfish and only has time for her man.
Have you ha a heart to heart with your sister? Does she understand the burden this is placing on you? Regardless, taking care of your mother round the clock is not good for your own mental and physical well-being. You need to enlist some additional help if at all possible. It can be done within your home. Just so you have some time to take care of yourself. Perhaps you can get a home health care provider to come in a couple of times a week. After you have shown her the ropes, you can structure some personal time for you. You need to learn to take care of yourself even in the throes of this difficult scenario.
My sister is not the kind of person I can have a heart to heart with. She is very selfish and is one of those kind of women that her whole world revolves around her man. For instance, one day I had an emergency and needed to go to the hospital which is 20 miles away. I called and told her I needed to pick her up so she could drive me there and back (after a narcotic shot) and she refused because her boyfriend was taking her to buy a $5 hair product in a little while. I even offered to buy the product for her and she still said “no”. She knew our mother would be with me and I could not drive back after the injection. So, obviously she can not be counted on… We can not afford to personally pay for home health providers and as I explained, this state has a two-year waiting list and we haven’t come up on the list yet. We have been here almost 20 months and the whole time has been Mom and I…alone. The one thing that I am looking forward to is the possibility of moving back to California. I have been looking for a home out there and am hoping that before the end of the year, I have found something affordable and I can move us back out there where we are surrounded by people that love and care for both of us. Then I know that others will lend a hand from time to time and I can get a well-deserved break sometimes.
Yes, I know all these things being caretaker for my husband of 46 years that was dx with ALS 8 years ago and could continue his slow progress for 10+ years or not. Stephen Hawkins has had it since he was in his 20′s, usually is a 2 – 3 year life disease. Hospice says he probably won’t die within the next 6 months so they are out of the picture. I was able to receive a grant from the ALS Riding for Life and so have been able to get away in the past 2 years every 6 months. But when I do and have home care for him our adult children still think I am being extravigant as they might have to be around. I just came back from a respite and in 2 days just returned to what i/it was before the respite. And the plans to just get away are stressful making sure there will be someone here every day from the agency I hired, instructions for the meals i planned and how to feed him, his personal care instrutions with meds showering, shaving, clothing concerns, all contacts involved notified, household instuctions down to care for the dog, bird and fish. And then wondering if that will all really happen. Knowing while I am away I will get calls telling me what went wrong. And who will be taking care of 6 year old granddaughter if her mother is sick. She’s never hired a sitter. I’ve been to therapists and they say I am doing a good job, just keep it up. It’s easy to act like you are doing OK, taking care of him OK, just told to do something for yourself every week. I want to be his wife not his nurse. I never wanted to be a nurse. Then with him thinking that this is why I am his wife, just comes with the Mrs. to be his nurse, chief cook and bottle washer, house cleaner, manage the house and pay the bills because it is just a given. Like if it was the reverse? He has never participated in raising our children, never changed diapers, made a meal, washed clothes or ran a house while also working a full time office job. He did have a job too but In his spare time played his sports games, period. All the tips and advice just don’t work for me.
I think you are pretty burnt out and frustrated. Understandably. This is tough stuff and you do need to find a way to take more down time. Doesn’t sound like you have a dependable support system. Also, maybe if you found a way to take short, frequent breaks – that might the stress out of orchestrating all your husband’s personal care needs i.e. Part time home care when you are around and taking several hourlong breaks. This is hard and worth thinking through a solution that works best for you.
Yes, I do all that. I am an accidental caregiver. If you just can’t accept what is, like me, it is a constant fight to be independent. The way a lot of women get as they age. They get so over taking care of others for the last 46 years while also working another job. I am 65 and want my freedom, finally, don’t I get my time or am I selfish now? And especially from a 46 year one side marriage, yea that is my fault that I am here, thinking that is what I was supposed to do but not now. Can I have some years of freedom before I die? Spousal caretakers of ALS patients have a 30% chance of dieing first. I think they are the ones like me that still hasn’t accepted or feel honored to be their spouses caretaker. Soooooo???
Sounds like this has been so difficult for so long. I’m sorry that this continues to be hard. Maybe you could just find even an hour a day that is just for you – a walk, meditation, talking to a friend.. something that makes you feel good. Doesn’t sound like you have much of a choice right now, but within your day perhaps you can create some time that is just for you. Also, maybe a more spiritual perspective might help.. like prayer or believing in a higher power – something bigger than the self.
Thanks so much for this post. Helplessness, anxiety, guilt, and depression all came up when I was a caregiver. I was fortunate enough to be a solo caregiver, so I didn’t have people telling me what I was doing wrong, but that left a hole. I filled it by writing in my journal. I highly recommend that as a way of relieving stress. You don’t have to write much. You don’t have to write about caregiving. Putting pen to paper and seeing your words on the page helps.
B. Lynn Goodwin, Owner of Writer Advice, http://www.writeradvice.com
Author of You Want Me to Do WHAT? Journaling for Caregivers
Thanks Lgood, I will check you your site. I am a solo caregiver too except when others want to act like they are involved or helping and then I am told what I should be doing. If my daughter has to go out of her way to help everyone has to know it like she has given so much for me. She doesn’t volunteer to stay with him so I can get out but she brings him cherry pies and leaves me to take care of her 6 year old. Then he gets even more needy. It is my mind set not accepting my role as his caregiver when I don’t want to. How do I change my attitude without resentment and just giving in, again?