What Is Looking After Yourself

Biggles

This might seem a bit silly but it’s said to me often by medical staff “look after yourself” Could I ask what does everyone do to look after themselves. Apart from getting enough sleep which is hard, is it a frame of mind, time out on your own once or twice a week and then where do you go. When you have a baby you never stop thinking, caring and planning your life around this new child, I can’t stop planning around our new set of circumstances. Maybe a change in my mental approach.

SDianeL

the VA offered respite care so I could go do things. 4 hours each week. The caregiver came about noon and stayed until 4. I would run errands, go to doctor appts, or sometimes just go to a bookstore with a coffee shop and sit in peace and quiet. Sometimes I would get a coffee to go and go to a park or park beside a lake and listen to music. It recharged me. It helped that I trusted the caregiver.

Lgb35

this is a great question. I am on the path trying to figure this out now. I am starting therapy. She has a lot of experience with dementia and the impact on caregivers. I am hoping she will give me some ways to release stress.

Goodlife2025

I will be watching this thread closely as all the historical things I might have done to "reset" are currently not useful. It is so very difficult to take a relaxing bath when your shadow cannot bare for you to be gone more than 30 seconds. The walk around the neighborhood is done in haste and worry not at a pace of leisure and enjoyment. There is no reading for pleasure and these wee hours are my only respite. I too need new ways to give myself a break - just little ways to disengage and reset mentally, emotionally. 4 hours of respite sound like heaven; I could use 4 minutes most days. I will mention someone on here was taking scooter rides in their neighborhood during these wee hours and that vision has stayed with me so I think I may try a 2am bike ride before the weather changes here. 😅

Denise1847

https://alzconnected.org/discussion/74087/what-is-looking-after-yourself

Hi Biggles,

Based on my own experience, the medical staff have seen the destruction/deterioration of caregivers and is warning us to take our plight seriously. My physician has said multiple times how he has seen what the disease does to the patient and the caregiver. My caregiver experience has been akin to the frog in the pot of water slowly coming to a boil. My DH would not accept someone coming in so that I could leave for a few hours or attend an adult day care. The confinement, social alienation, mind-numbing routines, fatigue etc. took its toll on me physically and mentally. Fortunately, I was able to get counseling, meds for depression and the strength to place my DH in memory care.

Biggles, I share this with you to encourage you to do whatever it takes to protect your peace and sanity. Get a therapist who specializes in depression, grief and Alzheimer's. Try journaling. Think about writing your experiences/feelings etc. down to help sort out things mentally, exercise, learn something new, meditate, reach out to friends/family on the phone, learn about grief (anticipatory grief) and how it affects you. Caregivers are grieving the life we planned to have, the experiences we cannot do and our loved one's eventual death. Please be as vigilant with helping yourself as you are with your loved one.

CindyBum

I have a wonderful caregiver who cooks and does laundry for us. She’s here 3 days a week for 4 hours. I’m lucky to live near a beach. So. I get a beach walk at my own pace. I shop or meet someone for lunch. I also often just park on a hill above the town’s little pier and stare at the water.

Nearly a year into this arrangement and my DW still complains every time the caregiver comes. Not that it bothers me as much anymore, but I really thought that might go away. Ha! I now see it as a helpful reminder to “fight” for me and taking care of myself by not giving in to those complaints.

BethL

Don't neglect dr., dentist and vision checks for you. Have suggested screenings appropriate to your age.

howhale

Had people tell me that same phrase countless times as if there was something magic I should be doing to "take care of yourself". When the burden became so great that I just could not physically handle it alone any longer, I hired caregivers to sit with my wife each day. It started at 4 hours per day for 5 days and eventually grew to 7 hours per day 7 days a week as her condition progressed. Caregivers allowed me at least time to take care of grocery shopping, critical doctor appointments, etc. It also allowed me the chance for just some private quiet time to read, nap or whatever helped that day. It became important because when alone with my wife I was "on duty" every second of every minute because that is just what it takes. You have to find what will work for you to allow you to recover some, definitely not all, of what we lose as caregivers. Also, I had to find people as caregivers who I could trust with my wife alone and who had experience or understanding of caring for someone with this disease. Some caregivers did not last long because, while very good at caring for a physically impaired person, they failed miserably at being adaptable enough for memory care. They could not adapt on the fly to my wife's ever changing needs or condition. In all honesty, home health services proved to very poor at providing the right people and I fired them all. Besides the fact that you will pay a premium per hour for their service and the caregiver receives a pitifully low rate, they were just bad at providing people I would trust with my wife.

harshedbuzz

Sometimes "be sure to look after yourself" can feel like one more thing on one's to-do list. Just saying.

HB

SuzanneG

What I’m doing with my free time, which is few & far between.

Getting a pedicure. Getting my hair colored, going shopping at thrift stores, or the mall, or Costco, going to the library, reading a book, going to a zoom meeting online, going for a walk, going to the gym, calling a relative or friend.

M5M

https://alzconnected.org/discussion/comment/253517#Comment_253517

My DH also complains about the caregiver coming in. Yet, after I leave and return (full of guilt for leaving 2 hours ago)….I walk into the kitchen and he and the caregiver are swapping stories, happy as can be.

Metta

Honestly, I get annoyed at people constantly telling me to "take time for myself" and "take care of myself" by those who are not living our constant daily struggle. When I pay a hired caregiver, I have to buy groceries, pick up prescriptions, fix things that are broken, or get work projects accomplished since I work from home. I think it's one of those things that people say, like "I'm sorry" when someone dies. What else are they going to say? What do medical staff know or really care of the struggles we face every day?

That said, I do exercise, meditate, journal, eat healthy food, use constant positive affirmations to keep DH in a good frame of mind (also helpful for me!) and fight for every single minute of quality sleep I can get. That is a fight for survival so the drowning man does not take me down with him. I am just keeping my head above water. For me, the phrase "take care of yourself" does not reflect the critical nature of my fight to survive.

Chris20cm

https://alzconnected.org/discussion/comment/253514#Comment_253514

Thank you for this response, I find it very encouraging because DW in stage six, has barely let me out of her sight for eight years and will not accept home care, and will likely have a meltdown when she goes to memory care. I am burned out and am considering counseling, medication, whatever creative ideas might help make the transition before I blow a circuit board.

White Crane

Sometimes I think people don't know what else to say. My standard response is, "Thanks, I'm trying." Then I move on. For me, taking care of myself means physically, emotionally, mentally, and spiritually. Even though my husband is in MC, there is still a lot of stress. When he was home, I had a caregiver from the Area Agency on Aging coming in two or three times a week. It helped, but honestly, when she left nothing had changed and I was right back where I was. Physically, I try to fit in some exercise to help relieve the stress. I am blessed to have my tai chi class twice a week. Also, I try to eat healthy. Caregiving is hard work and we need our nourshment. I brush my teeth twice a day too. Emotionally I try to call a couple of trusted friends at least once a week, and sometimes more, although it was hard to do when he was home. My husband always got upset when I was on the phone. He thought I was talking about him. My doctor prescribed medication for anxiety and depression that I still take. Mentally, I try not to let anger build up…and there is anger. Reading always calms me down. Deep breathing exercises also help as does writing things down. I avoid watching anything violent on television and try to watch uplifting movies. Spiritually, prayer and meditation time are important even when I don't think I have the time. Ufortunately, I don't always do a great job with all of this but it's the trying that counts. None of us are perfect and what works for me may not work for you. Sometimes a good cry is part of taking care of myself.

wose

I was so stressed out on Thursday, I hate to admit it but I left my DH with the Drywall Boy. Sounds funny since it worked but could have been disastrous. This kid had been here 4 days straight and I think he felt sorry for me with all the cussing DH was doing. H won’t accept daycare or home care so like everyone I was at a breaking point. So, Thursday ( thanks the drywall boy ) I got a wonderful 1 hour massage from a person my age who could hold a conversation. I felt guilty but it was heaven for an hour. Thank God this place is only two blocks away. I certainly don’t condone what I did. It just illustrates what one resorts to when the “ what you doing to look after yourself” rears its ugly head and you’re all you have.

Biggles

https://alzconnected.org/discussion/comment/253510#Comment_253510

ha ha a 2am bike ride sounds just the thing.🤣

marier

Wow! This thread has been so helpful to me! In the beginning I wasn't sure what take care of yourself meant. I was just rolling with the punches. Now 13+ years later I am learning what it means to take care of yourself. It is hard to work in activities that bring peace and relaxation without guilt. I am doing some very simple stuff and telling myself that I deserve to walk everyday for a hour with my dog, my doctors and dentist appointments are a must do and a pedicure every month is on my to do list. I neglected myself always putting DH first in early stages and now I take advantage of the help the VA offers , Hospices as well as when family and friends offer to help. I have also say frequently "It's good enough" and move on to the next task. I am trying to let go of my perfectionism.

MPmom02

I wish I could get the VA to help us. They denied my husband because they said, he was JUST in the Army Reserves. My husband literally had to hold me back.

Biggles

Thank you so much you have all opened my eyes to taking care of myself unreservedly. Still not sure how I’ll do this but I I’ll use all the resources I can find.

Timmyd

I am always learning how to adapt and better deal with the changing circumstances. A few things:

I am getting better at not caring how DW speaks or behaves in public, as long as it is not a threat to the health/safety of herself or others. I take care of myself by not stressing over anyone's reaction to DW's behavior. Sometimes when people stare at her with disapproval, I look back like "Do you really want to go there with me?"

I believe I am capable of learning new hobbies and developing new interests. I take care of myself by focusing on things I can enjoy inside our home or within the boundaries of our property. These are things like cooking, home improvement, re-decorating, gardening, de-cluttering.

We disagreed about things over the years with regard to how our home was decorated and organized. DW no longer cares. Now is my time to do things my way.

SDianeL

https://alzconnected.org/discussion/comment/253630#Comment_253630

shame on them for saying that!

• Federal Active Duty: Reservists who were called to active duty by a federal order and completed the full period of that order are generally eligible for VA health care benefits. 

Biggles

https://alzconnected.org/discussion/comment/253648#Comment_253648

Good stuff and you made me smile your turn to do your thing.

ARIL

https://alzconnected.org/discussion/comment/253531#Comment_253531

Agreed absolutely. Sometimes being told to look after myself sounds like criticism and that oh, right, here’s one more thing I am failing at. If I would just try harder, they could get back to their lives and not think of me. Or that’s how I think when I am grumpy.

At the same time I know that some people want to express concern and don’t know what to say.

And I am trying: I maintain regular doctor and dentist visits, I try to exercise, I see friends. But a full-time job plus caregiving is getting to me. My LO is in a facility, but the amount of effort is still very great (laundry, supplies, visits, medical appts, finances, communicating with his family and friends), and the worry and sadness about the decline are persistent.