Our questions this week are about the feelings that we caregivers struggle with -- disappointment and guilt.
Q. Dear Terri,
My partner and I have never married, but we’ve been together for 11 years. He was diagnosed 2 years ago, but I’m sure he has had PD for longer.
I was not prepared for this. I don’t like it, I don’t like who I have become. And frankly, I keep feeling panic at the idea that this is my life now.
What do I do?
Can this be me?
A. Dear Can this be me?
Sometimes this PD life seems like we’re in some kind of dystopian movie where a force from outside ourselves changes our partners (who remain unaware), and changes us as well.
Wait – that is the life we are leading. These changes are real.
But I think there are two kinds of changes that caregivers experience.
First, there are the changes that we observe and experience – our loved one’s symptoms, both motor and non-motor; their increasing need for support and direction.
But the other changes are the ones that seem to just show up inside us. Before we know it we are snappy, and irritable and impatient. And I’m guessing that these are the sorts of changes in yourself that you don’t recognize and don’t like.
Clearly, we have no control over the fact of PD. We have some control (along with our PWP, their medical providers and other resources) over how the symptoms manifest themselves.
And we have the most control over what we do; the choices we make; and how we respond.
Now. All of that seems a little obvious. But what many caregivers struggle with is the third thing. We are now called on to make changes, and we don’t want to. We don’t like it. We want things to be the way we expected, the way we planned.
There’s an old joke – you’ve probably heard it before, that the way to make God laugh is to make plans. Right? Things happen.
And if it had not been PD that showed up in your life and your loved one's, it would have been something else.
If we operate as though there are only two possibilities< had “life as we wanted it” or “the caregiving life,” of course we will be upset and disappointed. But the plans we made were not guaranteed. This is the life we are in.
The reality is that no matter what we think, illness, aging, weakness, injury, and even death are in our futures. So taking off the blinders about these real world changes helps us recognize that what we wanted and expected would very likely not have turned out as we planned. And even your friends who are sending you photos from their latest safari travels, or even the weekly book club, undoubtedly have their own struggles, even if they aren’t as overwhelming as PD caregiving can be.
Let yourself know this reality. Let yourself grieve the losses and disappointments, and then find a way to shake it off and ask some new questions.
“Here’s what I know is true. Here are the choices I’ve discovered. Here’s what I choose for now.”
This way of managing lets you find and hold on to the power you realistically have, and use it well.
Your partner is going to change. Your circumstances are going to change. Your finances are going to change.
With the knowledge that Parkinson’s is going to bring about change, you can choose what sort of caregiver you want to be, or if you will be a caregiver at all.
Then you can start the hard work of choosing and acting on your choices. And as for feeling impatient, or angry, or guilty, I'll talk about one of those today. The others will come up soon. I guarantee it.
Q. Dear Terri
The big question I have is how to stop feeling guilty when I leave my mother after a visit in long-term care, when she wishes aloud that she could be home with family.
I do visit three times a week and wish I could visit more frequently. It is obvious that she enjoys having me close to her as she and my father lived with us for almost ten years. My father passed away in 2008 and I have been my mother's support for the past 15 years. I work full-time and lost my daughter a little over a year ago, I am now contemplating retiring early and I am feeling the caregiver fatigue, and the existing grief and anticipatory grief are weighing on me.
My mother is now in long-term care, but she frequently lets me know that in the "old days" people could grow old within their family unit instead of sending them away. I can't tell you how that leaves me feeling other than guilty, and ashamed, but I know that I could not care for my mother full-time and bring her positivity by abandoning my own life.
How does one deal with the guilt of not being able to do "more" for them?
Signed, Guilty, or Not Guilty,
A. Dear Guilty or Not Guilty,
That is the question, isn’t it? Especially when your mom is so clear about what she wants, and tugs at your heartstrings by talking about the “old days”.
It’s a nice image, the old-fashioned family around the wood stove, with granny in the corner with a dog at her feet, knitting, telling the children stories, and waiting for the end to come. But, in the old days, granny would be 60 not 80. If she had Parkinson’s she would be rigid in bed, with no carbidopa/levodopa or other modern medicines. If she’d gotten a cold, or an injury, without antibiotics she’d have succumbed to pneumonia or an infection within weeks.
So the “old days” were not “the easy days.” People didn’t live as long or as well with the illnesses and conditions of aging. So, G or NG, don’t let the nostalgic image live in your mind as though it had ever been a real and perfect time.
Once you aren't saddened by such story-book ideas it's also important to notice that she does wish that things in her life were different – and you wish that too.
My suggestion to you is to start by saying “I know mom.” That simple statement lets her know that you’re not ignoring what she's said--that you've heard her.
Then you can say “I wish it too.”
Next, ask yourself what else is true:
You wish Parkinson's was not so tough?
It makes you sad when you have to go?
You know it’s hard on her when you leave?
This is why you make certain to visit as often as you can?
Speak truth about the situation, and then ask her to think with you about what would help, since you can’t bring her home.
This approach lets you take your mother’s side, and helps her be on your side a bit as well.
You’ll stop feeling like you and she are in opposition. You both wish it could be different. You each do what you can to make things work as well as possible.
Then one more strategy.
When you arrive, let her know how long you will stay. And when you leave, make the leaving calm, quick and without a lot of apologies. Help transition her into what she will do next, so you don’t just leave her sitting alone and staring as you walk away.
It might sound like this: “I love you mom. It’s time for me to go, so this is a good time to (work on this activity, or go to an event in the group room, or turn on a favorite video).” Then say “I will see you soon,” and leave.
I hope this helps.
And my verdict? Not Guilty.
Hugs x 4,
PS. More questions please! If you have a question that you would like me to answer on an upcoming Friday, just email firstname.lastname@example.org, and be sure to put QUESTION in your email subject line. And sign up to join my mailing list, (click "Grab Your Lifeline") where you'll get extra emails about the caregiving life--and more.