Category Archives: Caregiver Support Groups

Spilled milk is just that

November is designated as National Caregiver month. I’m pretty sure caregivers feel like they need more than one month of recognition for the variety of jobs they take on day in and day out. I’ve spent my fall immersed in two different caregiver situations, both where husbands are caring for their wives. The three stories below are meant to help you remember that letting go is always important when giving care, and especially during the holiday season.

Situation One: A gallon of milk

My friend with Parkinson’s disease is too weak to lift and poor from a gallon jug of milk. Seems like a relatively simple solution: buy a smaller size container. But it’s not that easy. Sure there are numerous ways to solve this, but what one needs to take into account is the relationship of the couple. For many of you, we’re talking about your parents. They’ve lived together and operated as a unit for how-ever-many years. Their long-standing habit of buying milk in a gallon size container is too difficult to break. You may suggest a whole slew of alternatives on one visit, and then return for a second visit only to find the gallon-size container of milk. So the milk gets spilled all over the counter; it’s only milk. Don’t exhaust yourself trying to convince your dad that it makes more sense to buy in smaller containers. Heck, it may even be your mother who is making the buying decision and your dad simply wants to allow her that choice. Let it go.

Situation Two: Two right feet

Your mom comes out of her room and is shuffling a bit. You notice her shoes and see that she’s wearing two shoes that look similar, but are actually two different shoes. And she’s wearing the right shoe on her left foot. This is not a big deal in and of itself, but you may feel embarrassed for her. You’re going out and this once well-dressed woman is wearing one flat shoe and one with a heel. Your dad doesn’t notice the difference. But this one isn’t just about vanity; there is a safety issue to address. If one shoe has a heel and the other is a rubber soul, she could risk a fall. Can you get rid of one of the pairs of shoes? Can you talk with your dad and suggest he help her pick out a matching pair? Seems like reasonable requests. Have the conversation, but when Mom comes out with two mis-matched shoes the next day, let it go.

Scenario Three: Dementia and decision making

“It’s up to her,” said my friend. He was referring to whether or not his wife should have a three-step eye surgery that would return her eyesight to one eye. My friend is mixing up the details of the eye surgery with her diagnosis of Alzheimer’s disease (AD), saying, “There’s no cure, you know.” She’s right, but we’re not talking about AD, we’re talking about an eye procedure that would enable her to read again. You can try to talk with your mother, and maybe in the past it would’ve been a beneficial conversation. No longer. When a brain disease, such as Alzheimer’s, clouds her thinking there is no rationalizing. What makes this situation even more difficult is your dad. He is clinging to the past: Mom has always made her own decisions. Except now she can’t. She is unable. Her brain is not working in a way that allows her to digest facts and make rational decisions.

At some point, you have to let go of convincing either of your parents to change. Not easy, but necessary for your health. Find a trusted friend or a caregiver support group and vent, rant, scream, and cry. Let it out and then let it go.

Make a list and hand it out!

Recently I made up a Caregiver To-Do list and to my surprise, audiences ate it up. It’s a simple notepad where you get to write down what you need help with. And then give it away when people ask, “What can I do for you?”

Let me know if you think this would more easily allow you ask for help.

Or tell me where you struggle in asking for help. People want to lend a hand, they just need to know what you need.

 

 

Why it’s important to hold a family meeting

I’ve been involved in several family caregiver meetings, including one with my own family when my Grandpa Gus needed care. My goals were simple: Air emotions and make a plan. I opened the meeting by having us go around the table and check in. After each person was able to express feelings, we made sure everyone was clear about grandpa’s diagnosis and what he needed for care. We then allocated the tasks among us. Even though the tasks didn’t end up being accomplished exactly as assigned, it helped to have everybody aware of how much needed to be done. Here are some of the things you and your siblings may be called upon to do:

  • Help with activities of daily living (bathing, eating, getting up, using the bathroom, dressing);
  • Drive to and from (whether to doctor or social activity)
  • Organize medication
  • Financial help
  • Assist with housing (from housekeeping to finding a new living situation)
  • Manage insurance and health care
  • Shop, do laundry, cut grass, etc.
  • Use technology to make life simpler (but more challenging for you to re set, explain, update your parent’s devices)
  • Advocate for your parents
  • Understand any disease, so that you can be a better caregiver
  • Support each other and yourself

I remember facilitating a family caregiving meeting for five adult children and a number of support people. The primary caregiver was tired and wanted her siblings to understand that, by keeping their father on life support, they were not only going against his wishes, but also extending her role to the point of exhaustion. When two of her siblings said that she didn’t need to be at the hospital all the time, she was furious. “Who’s going to catch the mistakes?” she raged. “Who’s going to hold dad’s hand? Who’s going to catch the doctor when he comes by if I’m not there?”

Her need was to be heard and understood, especially when she felt the rest of the family was going against their father’s final wishes. But her siblings needed her to understand that while she had taken on the primary role, it wasn’t an exclusive one. Just as she needed to be there, they also needed to be able to help out and be involved in their own unique ways.

It’s worth noting that even if you’re prepared to play the primary role, it may not always be what’s needed. I could not have taken care of my mother full-time and it was not the right spot for me to play lead with my sister’s care. Don’t let your ego get in the way. Examine the family dynamics and choose the best person for each role. Get in touch if you need help.

Beating depression by being both busy and engaged

When I have too much down time between projects, I can easily spend more time sleeping or surfing Netflix than is good for me. I get stuck. My depression blooms when I am not engaged in IMG_2826 - Version 2meaningful activities. I lean on my SANE Method*, knowing that the first word, Supported, is crucial to moving through a tough period. I have a circle of safe and positive friends on whom I can call.

I also understand the importance of being busy. I don’t usually subscribe to “busyness for busyness sake,” but at times there is value in simply getting out and doing something—anything. This won’t sustain me in the long run, but it works to move me through to meaningful activities.

Family caregivers can easily fall into variations of a similar trap: thinking that the appearance of their parents being busy trumps the actuality of being involved in an activity that’s engaging and meaningful to them, or thinking that — like some impromptu cruise directors on the Good Ship Getting Older — it’s somehow now up to the children to constantly be planning activities for mom and dad.

Don’t get me wrong. There’s plenty of value, mental and physical, in spending time with your parents to help them stay active and busy. But I believe it’s the “slow times” and the hours when your folks are on their own, pursuing their own interests in their own ways, that provide the greatest payoffs for their emotional and bodily health.

Just as is true with yourself, the goal is to help your parents get into things they will find enjoyable over the longer term — including activities they might do solo and under their own direction — because those are the ones they’ll do regularly and sustain by themselves.

If you notice your parents isolating themselves more and more, try opening a conversation about what brings meaning to their lives. And ask them how you can support them. Your support — whether is be simply listening to them or assisting them with ideas — can be one of the single most important things you do for your parents.

*Supported, Appreciated, Not guilty and Energized.

 

 

 

 

No, You can’t do it by yourself: 5 Tips for Caregiver Support

 

My mom burst into tears in the middle of a restaurant dinner and instead of asking, “What’s wrong,” I was embarrassed. I thought, “Why can’t she pull herself together?” My mom had a disease called Huntington’s disease, which renders its victims incapable of acting what many call “normal.”

If you take care of someone with a disease that causes dementia, you are not living a “normal” life and caregiving is therefore doubly challenging. You may think, “He’s doing this just to drive me crazy,” when in reality the repetitive questions or unpredictable behavior are not malicious. You’ve known this person for years and now you are their caregiver—helping with daily tasks, while getting to know someone who is actually a very different new person.

Think of it this way: Do you ever get really frustrated at a vending machine when it won’t take your dollar bill? You straighten out the bill, insert it again, and it just keeps spitting it back, even though the bill looks fine? Your loved one may also look fine on the outside, but their brain is not working the way it used to. You need to find a new way of being with him or her, while you simultaneously figure out how to take care of yourself.

I know you want to scream. Some days you even yell at your loved one, but that only adds to your stress. This is why you must find support—a person or a group which allows you space to say all the things you simply can not say directly to your loved one. Being supported along your caregiving journey is the first step in being a S.A.N.E. caregiver—Supported, Appreciated, Not guilty and Energized. Start by finding support for yourself:

  1. Educate yourself about the disease so you know what to expect.
  2. Let off steam with a trusted friend.
  3. Set aside a half-hour a day to do something just for you.
  4. Join a support group (or start one).
  5. Find ways to laugh every day.

You know you would do anything to help out someone in your shoes. It’s time to take that same spirit of helpfulness and turn it inwards. Ask for help and let others support you.

Caregiver support online

CaregivingNOW_OnlineConvoBannerWebSmallThere is a forum where you can get support on your caregiving journey. And if you’re not a caregiver (yet), I’m sure you know someone who is. Sign up here and join the conversation: http://unitedfrontmn.org/caregivingnow/.

We tend to avoid having the conversations around giving care because we feel we ‘should’ be able to do this without assistance from others. Well, that’s just not the case. We all need help when caring for someone else, lest we lose ourselves in the process.

November has been deemed National Caregivers Month and I sincerely hope that this one month of highlighting the often-times tough journey of family caregivers expands the understanding of this role.

Join me today for a special 3-day conversation focused on helping you create more joyful holidays with clearer boundaries. As always, if you want one on one help, click here. And if you’re looking for an on-going support group, check this out.

We All Need Support On Our Caregiving Journey

I can’t take it any more!
I don’t know what I’m doing.
I feel like a failure!

Statements like these are what I routinely hear from family caregivers. We are not trained to do this job and yet we think we “should” be able to do it on our own. When we get frustrated and don’t know what to do, who do we turn to?

I’ve been developing the Unexpected Caregiver Support groups—so that family caregivers can meet once a week and understand that they’re not alone. In these peer-to-peer run groups, I have seen family caregivers let out huge sighs of relief and gratefulness, knowing that they share this journey with many others. That their feelings aren’t unusual or crazy. And in these groups they can speak their feelings and trust that what is said in the group, stays with the group. We have built little communities of trust.

When you’re giving care to a family member, it’s not uncommon for your past issues to resurface. All those unresolved issues of childhood come bubbling up to present day and you are stuck with an overload of emotions. What do you do with the feelings? Who will understand?

Caregiver support is crucial. You can receive one-on-one support from me or I can help you start a support group. Contact me. I’m here to help.

Boosting brain health in Salt Lake City, UT

A 10-year-old asks questions about dementia

http://www.slcolibrary.org/le/lelp/index.htm

It wasn’t coffee that got me going today. My brain was in gear as I followed carefully plotted directions of how to get from the Avenues in Salt Lake City, UT, to the Sandy Library, about 30 miles south. I don’t know about you, but driving Interstates in an unfamiliar city with hand-written notes of how to get “there” shifts my brain into drive. Read more »

Kari Berit on KARE 11’s Showcase Minnesota – Tune in Tuesday November 23, 2010 at 10 AM

November is National Family Caregiving Month and Kari Berit is spreading the word that America needs to discuss caregiving. More than 65 million people are caregivers in America. Read more »