Tag Archives: Alzheimer’s disease

Support, Support and More Support. Did I Mention Support?


I had an interesting conversation the other day that served as yet another reminder that none of us are truly alone, even when nobody else is in the room.

A friend of mine, who is  the primary presence in his parent’s life, told me, “I get tired of feeling upset all the time. I get tired of feeling like nobody really understands. I get tired of every mention of my father being viewed as loaded.”

We went on to talk about support groups, family support, friends, and all the other options out there. Neither of us like going to the support groups at the facilities where our parents live because we want at least a little bit of a curtain of emotional privacy separating us from the caregivers and other staff. We both agreed we also tire of hearing, “That’s the nature of the disease,” over and over again from staff.

We both agreed that facilities could better serve their populations and the families by having qualified social workers on staff. It’s one thing to talk to a staff nurse or a director, it’s another thing to speak to a trained counselor who is bound by the rules of confidentiality and is experienced in the issues surrounding emotional communication.

Then, he said something that really struck home. “Nobody gets it. My brothers and sisters don’t get it. My wife doesn’t get it. Everybody acts like they get it but they don’t and I don’t know how to explain it. I carry sadness around all day everyday. I carry a little bit of guilt with me everywhere I go because I’m not always there. Besides staff, I’m all he has. I never get a break even when I’m away from him because I care so much about what he is going through. I want and need to talk about it but nobody wants to hear it as much as I need to say it. I’m sorry. I sound like such a whiner.”

I laughed when he finished because I think many caregivers feel like whiners. I think many caregivers feel like they are sometimes labeled as whiners. I think some people do label caregivers as whiners.

Here are a few things we came up with that may help.

  • Try to find the extraordinary in the ordinary because every little bit helps.
  • Find several outlets be they people or activities. Support groups, friends, hobbies can all help alleviate stress even if they don’t change the circumstances. Switch it up so nobody gets too much.
  • Use what you’ve learned to help others whether you become another caregiver’s ear and shoulder or you blog about it.
  • If you really feel like you’re not doing the right thing, or not spending enough time with your loved one, change it. Then see how you feel.
  • Treat your loved one the way you want to be treated. When we do this, it sure seems to help alleviate some of the feelings of guilt.
  • Avoid alcohol or other drugs. They really only makes things worse in the long run.
Aside

I have to admit, every time I look at the header of My Father Doesn’t Know Me Anymore, I get a little sad. The series of pictures reflects more than just JHP,JR’s life. When I look at it, I see the potential, … Continue reading

Swim To The Ladder, Friend


                  
                        “I feel like I’m drowning.”

Those are the words spoken by a sweet friend of mine who was struggling with managing the increasing intensity of her role as a caregiver.  It’s such a hard place to be, but why would she be anywhere else? How could she be anywhere else? It’s a noble mindset that can leave a caregiver feeling overwhelmed and alone. But what else do you do?

After chatting with her, I went through some unpublished posts from last year, and lookie what I found. I wrote this in the spring of 2012 when I was going through managing a few realizations about people while continuing to make runs back and forth to dad’s place. I think it speaks to the drowning feeling.

“As you may have noticed, I took a few days off from My Father Doesn’t Know Me Anymore. I needed a break from thinking about this all the time, something that I believe most family caregivers need. Our loved ones seem to be constantly on our minds, even when we think they aren’t.
 
“I’ve been trying compose a wonderfully positive to piece – something any caregiver could relate to. Well, guess what? I got nothin’ right now. I don’t have any sweet little anecdotes to share about JHP, JR, his interactions with my daughters, or any clever little realizations that can help others. I just don’t have anything right now.
 
“I am exhausted and feeling very much alone.  I feel unduly judged for my concerns about the goings-on in dad’s world by people who aren’t supposed to judge me.
 
“I’m not sure how much longer I can keep this up.”
 

Reading this brought it all back to me. I felt it in my being, in my stomach, in my head – drowning while treading water in a dark lake all by myself. It was that feeling of no matter what I did it wasn’t enough for anyone, and I was tired of being seen at the over-protective, overly concerned, nit-picky B of a daughter. I needed clarity.

Like my friend and me, other family members on the front line feel the need to be with their loved ones. It’s a strong pull based on a variety of emotions – love, guilt, fear, concern, distrust, holding on, devotion, retribution, need for control, and maybe all of them combined.  These are the people who are in the thick of it emotionally, physically and mentally. It’s often hard to understand why others aren’t in it with them, why people don’t get upset about the way hired caregivers are behaving, or  why their “support” network doesn’t understand the need to talk about what seems like nothing more than trivial issues. Family and friends who aren’t on the front lines may not understand, and the front-liners feel the burden of the responsibility weighing them down more heavily when they feel alone.

It can be a lonely, scary, frustrating, exhausting place to be. It becomes even lonelier, scarier, more frustrating and more exhausting when your sounding boards, those “support” people, don’t contribute physically or emotionally. It’s not easy for anyone, but I have to say I’m biased. I lean towards being supportive of the one doing all the “grunt” work, so to speak. Getting yelled at, being bedside, lying to save the pain of realizing the people they are asking for have been dead for decades, working your life around your loved ones’ needs, leaving work to run to the hospital, doing all of the leg work creates a huge responsibility. And if that caregiver is a parent…..

So, the first thing I would say to someone feeling this heavy burden weighing them down, “Swim to the ladder.” The ladder needs to be made of rungs that represent healthy steps to build you up so you can keep going and pull yourself out of the water for a bit. If you choose activities that aren’t good for you – drink, rage, judgment, burying your head – then you won’t last much longer on this journey, and you won’t be any good to anyone.

One of the most important, yet challenging, rungs on the ladder for caregivers is to find someone, or a couple of someones, they can talk to openly and honestly. Caregivers need to be able to freely say what’s on their minds so they can  put it out of their heads and into the daylight to think it through. They need to feel heard, to feel supported. Caregivers last longer and are more effective when they are able to communicate what they want or need from those people who are their sounding boards. The last thing a caregiver needs when they’ve been giving their all is to hear someone minimize their concerns or treat them as a burden.

And, just a quick note on “giving their all.” Sometimes, the caregiver’s “all” seems to be less than someone else’s “all” because the caregiver is doing it ALL the time, because they are exhausted, because they are emotionally and physically drained from supporting the weight of another person’s physical and emotional being. After a while, an unsupported, overworked caregiver’s stamina wears out. It is like an athlete who just finished a marathon. There is a recovery period. There needs to be time between workouts for muscular, mental, emotional repairs. Caregivers can put on their blinders and focus all their energy on the tasks at hand day after day after day, but it will wear them down. It will drain them. It will leave them feeling uncertain, exhausted, in need of a friend or ten.

To the support network, I say  be straightforward with the caregiver. Let him/her know what your limits are. Don’t wait until you are at your wit’s end with your life and then blow up at them. Please try hard to keep your word, your commitment to them, and do what you said you would do. If you can’t, then be upfront. But please don’t leave the caregiver dangling. And certainly, if you can’t live up to your commitment, don’t get on the caregiver for feeling stressed out, run-down, or needy.

To the caregivers I say, take that time to find support. Set boundaries with your loved ones who aren’t on the front line with you, tell them what you need if they aren’t going to be there with you. But don’t put all your hope is one person. Find a support group. They can help you when you really are alone or when you just need a more understanding perspective. Consider journaling,  and try try try to take mental and emotional breaks to reenergize your heart, body, and mind. It’s a must. You’ve earned it!

And, finally, learn to dust drama of your shoulder and onto the floor. If you get through this journey without drama, write a book about it and share your techniques with the world. You will be a billionaire!

Keep up the good work!

Lucy
Jerome’s Daughter