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Finding and Maintaining Your Personal Space While Caregiving

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Caregiving often becomes all-consuming. It has a way of taking over your life, leaving its evidence in every room of your home. The kitchen counter becomes a make-shift medicine cabinet, medical supplies find their way into drawers and reading material clutters the coffee table. Soon, the relatively tidy home you kept pre-caregiving becomes a thing of the past. Combine that with the stress of taking care of a loved one, and the thought of ‘personal space' becomes a thing of the past.

While carving out some ‘me time' and a place to call your own are extremely important, caregivers often feel guilty at the prospect.

Emma Dickison is president of Home Helpers, one of the largest home care organizations in the United States. She learned about caregiving at a young age. In high school, her grandmother came to live with the family after suffering a fifth stroke and stayed with them for nearly two decades. Over the years, Dickison has cared for other family members, as well as her own parents. What she's learned from her experience is that carving out some time and space for yourself is not just something you should do; it's something you have to do.

"When you're a family caregiver, you look at it as such a responsibility," Dickison says. "It's all consuming. But like everything else, we all need a respite. In the work world, most of us have Saturday and Sunday off, and caregivers need time off, too."

Dickison has a large extended family which helped care for loved ones when she and her siblings needed a break, whether it was for an hour or a weekend. While she realizes not everyone has that luxury, she stresses that taking care of yourself, mentally and physically, is a critical aspect to caregiving. "No one can do something 24/7 and have it be healthy. You have to take time for yourself, even if it's 10 minutes to do your own interests, catch up with friends or read the newspaper. That time is crucial."

Finding time for respite

So how do you carve out that time and space? Dickison says caregivers need to schedule their ‘me time'. Why? Because what we put in our calendar is usually important to us – it becomes a priority. Dickison suggests finding a time when you know your loved one is taken care of: when they're taking a daily nap, when they're asleep at night or at a weekly appointment when your presence isn't necessary.

Creating space for respite

In addition to finding some time to yourself, Dickison is also a strong believer in creating a space that's just for you – think of it as your personal retreat, where you can re-charge yourself. That might be a separate room in the home or just a favorite chair or couch in the corner. It doesn't matter whether you live in a large house or a small apartment - this area is your ‘happy place' where you can relax, unwind and revel in whatever brings you joy.

Dickison recommends decorating the area with photos of loved ones, or have a photo album with pictures of friends or your favorite place to visit. You might also want to dress up the area with decorative pillows and/or comfortable throw blankets in your favorite colors and textures. Using scented candles are another way to loosen up, along with flowers and plants which will brighten up any space and improve your mood.

Dickison recommends that before you make your plans, whether they be redecorating or setting aside some personal time, you discuss them with your loved one first. This is especially important if you're a caregiver who may be living away from your home temporarily, such as in your parent's house, and want to make a few décor changes. However, the message of the conversation is the same in both instances. Tell your loved one that having some time and space that's your own will help you take better care of them.

Of course, it's also important to create a support system for yourself as a caregiver. Rely on friends or other family members who can be a sounding board for you, or consider joining a support group where you can share your experiences with others who are understand what you're going through.

For Dickison, caring for her grandmother changed her life. Not only did she learn so much about the woman during the time they spent together, Dickison also felt called to a career helping older adults. The responsibility she took on at a young age turned into a tremendous gift with rewards that will last a lifetime.

 
Read more about: respite care
 

Comments

 
  •  Comments 1 to 10 of 30 
 
 

This is a great site, but this is the most unrealistic advise I've read on this site. Not everyone has the luxury of friends and family to help. Many of us are ALONE in this. Not everyone has a good relationship with the people they are caring for making it equally hard to do the job. Scented candles and decorative pillows??? Pa-lease!!!

 
 

Kedwards460

Give a Hug

Jun 20, 2012

Couldn't agree with SelfishSiblings more and I don't even have siblings but I've seen firsthand one cousin doing EVERYTHING while the her sister was just too busy (Course she wasn't too busy when her parents were well enough to pay for vacations for her etc). And FRIENDS -- honey they disappear yours AND the person you're caring for. My mom has one friend she can count on -- and you know why that friend is so reliable -- because mom PAYS her to help out. The other friends have pulled Houdini acts and thinnk they've resolved themeslves b/c they appear for quick bday and X-mas. My friends, honey I am an island to myself. Who wants to make plans 2 wks in advance with anyone just to see a movie??? Fortunately I do love my mom and have a good relationship with her.

 
 

Mayasbop

Give a Hug

Jun 20, 2012

It sounds really good, but it isn't practical.

In my house, we have an oxygen concentrator. Candles are out of the question, as is five minutes to catch up with anything other than housework, laundry and paperwork. Forget throw pillows and decorative throws as well. The budget doesn't allow for extras just so I feel pampered. There isn't any breathing room in it, either.

Who writes this stuff anyway?

 
 

Paka

Give a Hug

Jun 20, 2012

Candace, I'd end up with a comment longer than your essay to tell you how I've worked--over three years!--to get time for myself and the space to relax. Rather than do that, let me just say that both are essential for caregiving, both for one's mental health but also for one's physical health.

In my situation, progress has been slow and not without conflict. Mama, after all, has spent a lifetime (mine) trying to control me and make me be the little robot she can approve of. As committed as I am to seeing her through this time of her life, I am not any more willing today to destroy my own sense of self than I was 40 years or more ago.

While I very much respect her need for a safe and familiar environment, I also have to be able to take care of her efficiently and live in the same house with her. I have cleaned out closets and cabinets and rearranged things so that we have more food storage (and less decorative glasses), actual closet space for my clothes (and some really nice donations of mama's unworn clothes to fire victims and Good Will). My masterpiece is the conversion of my late father's hobby room into my own hobby room, but the den is also coming along nicely as a true family room where my husband and I can also feel comfortable. For the den, that means less bric-a-brac, better seating, and (if I can manage it) almost any other color than orange.

How does mama feel about this? Pretty good actually. The transition times were stressful because she couldn't imagine the end product or that there would ever be an end to the transition. Once a transition is complete, she's quite happy. I am, however, only working in areas that are not essential to her own identity. No changes in the "public" areas of the house, such as the living room, minimal changes in her bedroom for her care, continuing respect for her need to present herself and her home in a particular way.

Impractical? Essential! I don't like candles, but I love the smell of lavender. I have some lavender-scented dryer sheets in my clothes drawers now, and get a hint of springtime when I open them. Mama needs lots of little pillows to get comfortable on the couch, but they just annoy me when I have to sit where they are. My "decoration for me" is more in the line of pictures of beloved members of my husband's family (Mama is well stocked with pictures from my side of the family) stuck in my dresser mirror and the recent introduction of a new plastic tablecloth in the breakfast room featuring the color blue. My next goal is a chair that neither numbs my posterior nor dislocates select portions of my spine.

As for help, it's a real problem, but I have learned to ask. The worst that can happen is that I get a "no." I have also hired an out-of-work neighbor to help me with the heavy labors of managing (and reorganizing) the house as well as the occasional stint at mama-sitting. My husband steps in when I have to come back home (in another city) to see my doctors. I no longer feel guilty asking someone to come sit with mama while I get a haircut. I was several weeks overdue for the last haircut, but I just kept asking until someone felt guilty about saying no.

After all this effort, however, I can't really say that there is a "happy place" for me in my mama's home--180 miles away from my own home and husband--or true respite. All I've managed to do is create temporary and minimal "fixes" for stress and loneliness and boredom. As essential and helpful as they are, they do not replace closer families, more involved communities, and a safety net with fewer holes. Until that happens, maybe I will put some of those lavender dryer sheets in the linen closet . . .

 
 

cricketinafp

Give a Hug

Jun 20, 2012

I thought that the main points in this article were presented in a very positive way. While the pillows and comforters might not particularly appeal or seem realistic for everyone the point is what is important...."we need to give attention to our own personal needs and desires". I am taking care of my Father and I'm in the fifth year now since I moved him in with me. Before him I was a caregiver to both of my husbands parents until they died so I think it is safe for me to say that I do qualify to speak as a caregiver and sadly the one thing that I see people giving in to, surrendering to, is their own personal needs and love for themselves, myself included. We just lose balance between those we care for and ourselves because we really do care about them and what they are going through, in our minds their needs seem urgent and ours don't. I know that Caregiving is the most difficult experience we've ever gone through (for the majority of us) but even so I think we have a tendency to lose ourselves in the process. We usually do this for many different reasons, for some it's because of just not knowing how to ask for help, for others we don't have anyone willing to help because we've asked and asked only to be told NO or ignored, and then their are those of us who just feel like we should suck it up and do everything ourselves. Whatever the reasons, we find ourselves feeling totally overwhelmed, angry, bitter, resentful, frustrated, or just plain exhausted.

Many times the demands of caregiving are so great that it's all we can do to feed and bathe ourselves and get a little housework done if there's any energy left. Lets face it being a full time caregiver is TOUGH and most of us are doing far more than we are capable of doing because we don't feel like we have any other choice but remember many times it's the depression and negative thinking that creeps in on us that can destroy any thoughts to caring for ourselves. If we find ourselves in the "black hole" we need to admit to ourselves that somewhere we got off track in our own self care and take responsibility for our misstep and seek to find ways to include taking care of ourselves.. I think it doesn't matter if we use pretty pillows or a quiet corner in a room all to ourselves or even use our bed pillow to beat the bed with when we feel like we just can't take it anymore, the point is we need to DO SOMETHING positive for ourselves, it's part of self preservation. Honestly even the smallest, inexpensive things we do can help us survive and hold on to ourselves in spite of caregiving. Today for me it was picking a Magnolia flower off the tree as I was going from the car to the house. Just taking a few seconds to pick the flower, smell it, and put it in a glass bowl to float in some water, then putting it in my kitchen window seal to enjoy for another day reminded me that I am alive, and that I matter too. I don't have any siblings to help me but I do manage to have a little "me time" everyday even if it means that I have to say NO to one of my Fathers demands or make him wait a few minutes extra before I give him his meal, meds, etc. I make the "me time" a priority everyday. By doing this consistently I have been able to get rid of the resentment, anger, frustrations that I used to be extremely overwhelmed with. Now even though their are all the same demands being made of me I am caring for my Father and I'm a much happier healthier person. Thanks for listening to what I've said and I hope that my comments are helpful for some of you.
*´¨)
¸.•´¸.•*´¨) ¸.•*¨)
(¸.•´ (¸.•` ¤ Chirp Chirp Cricket Hugsღ

 
 

Mayasbop

Give a Hug

Jun 20, 2012

I've been my mother's caregiver for seventeen years. As her health has gone down, time for me has gone down as well. No siblings who are willing to help and 24/7 care take up the majority of my energy. Stress levels are such that I'm in the middle of a psoriatic flare.

So forgive me when I laugh at the fantasy that the writer of the article thinks we should all strive for. Somehow, in the midst of all the laundry, the meds, the meals and the medical appointments, it seems more than a little ridiculous.

I'm glad that others can have so-called "me time". As things continue to go downhill, there won't be any time for it. It will take every ounce of energy you have to just get up and start another day.

You'll find out. We all do.

 
 

Candace, Have you ever been a caregiver?? Just wondering....

 
 

Paka

Give a Hug

Jun 20, 2012

Actually, I've been there and done that--days of anger, frustration, bitterness, exhaustion, pain. Taking care of someone with dementia is not for sissies. It's also not for dummies, and I am very much on the side of "work smarter, not harder." It's taken me three years of full time living with my mother to make the progress I have (and I am still not finished), but these three years follow on a life time of dealing with a handicapped parent who has some some real personality issues. Believe me: Mama didn't develop dementia and suddenly become a nicer person.

What I found through a lifetime of experience is that I am the adult in this relationship, which means that I need to make adult decisions, not only about mama's care but also about my ability to be there for her until the end. I can't do that if I neglect my own mental and physical health. I have also found that it's not all about me--nor is it all about her. Every day is a struggle to find the balance between my needs and hers. She will always "win" when it comes to physical care, but I will eat my lunch first so that my low glucose level doesn't make me meaner than a junkyard dog. There's a lot of trial and error in this, but "The Thirty-Six Hour Day" has been useful in speeding up the learning process. I have also learned that there are no bonus points for being a martyr. I get no credit for suffering and sacrifice. What I do get credit for is making proactive decisions to make my life and mama's better through organization and constant learning. It doesn't hurt if things also smell nice or that I found a cheerful table cloth. But, no, I still don't like those throw pillows.

 
 

Jsomebody

Give a Hug

Jun 21, 2012

Nice work if you can get it....

 
 

Mayasbop

Give a Hug

Jun 21, 2012

Maybe I should post the short list of my mother's conditions along with the open abdominal incision that has yet to close nearly a year after it was made. The one thing that my mother still has is a working mind, but her physical problems require 24/7 care and I do it all myself. A nurse comes to take vitals and do a dressing change twice a week. Otherwise, the care is ALL ON ME. And it's all on me no matter what. I'm the only one who does what she needs. And I do it even when I'm sick or injured. There is no one else willing to step up to the plate.

Let's see... Diabetes, congestive heart failure, abdominal abscesses from wire mesh used to reinforce her abdomen after cancer surgery, a heart attack, a periocardial effusion, lymphedema, pulmonary hypertension, regular hypertension, depression, severe sleep apnea, thyroid problems, insomnia --- that's the short list. And I do my best to manage all the numbers and all the conditions that the numbers concern on a daily basis.

So, tell me how much "me time" I should manage to squeeze in. Or how I should make my mother "move over" for me and my wants because my comfort is so freaking important, so she has to give up her stuff for me. Tell me how to basically push her and her needs aside.

I'm sure your answer will be as fantastic as that article was.

 
  •  Comments 1 to 10 of 30 

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