We are so lucky, many of us, to have a spouse or other close family member to act as caregiver.  And there are many support groups, articles,  books and advisers to tell these people how not to burn out so as to be useful to their spouses. For this post, however, we’re addressing spouses who are the care-recipient, those of us who struggle with medical challenges so we can be more aware and compassionate about its impact on our spouses.    Dr. Maria De Leon offered to address this issue for us.  She’s been on both sides of the care-giver/care recipient fence so brings a unique perspective to the topic.  Following my post is Dr. De Leon’s take on the care-giver issue.  At the meeting in May, we can learn from each other by hearing from different philosophies and approaches, strategies that have worked and what we’ve learned.  (Note: The photos shown are of wonderfully loving relationships that I have known and admired in which one spouse has PD.)

In Sickness and In Health

From the very minute of diagnosis, I have worried about my particular “care-partner” – my dear husband.  We’re only in our mid-50’s and had plans and visions for our retirement years.  Not a single one included him being my caregiver.  With my diagnosis, some of my hopes and plans, like yours, struggle to survive or have been surrendered.  For example, we used to talk about where we’d like to move once the last child was out of school.  We referred to it as “the snow shovel test”, as in, drive south  no snow shovels in the garages and retire there.  Now, we joke about it still but in our hearts, we both know its isn’t likely to happen because my spouse would do better in our home area where there’s broader help for him as well.  And where he isn’t likely to be left alone.

One thing that has concerned me from the start is the impact of my illness on my  husband’s life, the everyday aspects, not including such long-range impacts like retirement. I’ve seen that you can gauge the health of a person facing a health challenge by looking at the spouse/care-giver. Do they look tired? Stressed? – Care-giving is hard work. How can we be more aware and compassionate about its impact on our spouses?

First, let me address the reality I’d rather not admit to.  Several care-givers have told me that, near the end especially, their spouse was very self-centered due to pain and stress.  Understandable, and I’m not trying to pretend we can be gracious saints until the end.  But we’re not there yet and our wings are still strong.

Some of the ways I have tried to take care of my care-giver…or is it care-partner, come from realizing how important it is that he have a full life that isn’t totally built around me.  Sports he enjoys, old friends, outside projects and so on are activities I encourage. I’m not naive; I know there will be a day I have to ask him to pass on some of that but not yet. And how else can we help out? We can avoid taking risks that might cause falls.  Why ask for avoidable trouble when there’s so much else for the ‘care-couple’ to deal with as it is. We need to keep open and honest communication a vital part of our marriage. We can prize our spouse and try not to take for granted the care they give. I’ve read the suggestion that we do something for our spouse every day. It can be small or large; it’s the appreciation and love that matters.

So what should we watch for with our “care-partners”?  Signs of burnout can include:

• A change in quality or lack of grooming
• Getting sick more often
• Withdrawal from friends and family
• Physical exhaustion
• Changes in appetite
• Feels depressed, trapped or helpless

Whatever our situation, we can watch for these signs. We can reach out to our doctors, our family or social services and try to find them assistance or maybe even a short reprieve.

Not sure how things are going with your care-partner?  One way is to review, with full credit and thanks to the Well Spouse Association and its website, wellspouse.org.

The Well-Spouses Bill of Rights

I have the right . . .

To take care of myself. This is not an act of selfishness.
To seek help from others even though my family may object. I recognize the limits of  own my endurance and strength.
To maintain facets of my own life, that do not include the person I care for, just as I would if he or she were healthy.
To feel and express my own emotions, even difficult ones such as sadness, fear and anger.
To reject any attempts by my loved ones (conscious or unconscious) to manipulate me through guilt.
To expect the consideration, affection, forgiveness, and acceptance, which I demonstrate in my caregiving, to be reciprocated by my ill spouse.
To take pride in the endurance and strength I have shown in meeting my ill spouse’s needs.
To protect my individuality and my right to make a life for myself that will sustain me now and when my loved one no longer needs my help.
To seek emotional support by participating in Well Spouse activities.
To expect and demand that as strides are made to provide assistance to those who are ill and disabled, similar strides will be made towards aiding and supporting spousal caregivers.
*This material has been adapted, with spousal references, from the AARP book “Caregiving:Helping an Aged Loved One” by Jo Horme, and by Peggy Meisel’s WSA original.

We all want to take care of our caregivers.  At our next meeting, we’ll discuss how we do that.  It ought to be interesting and I hope these two posts will start things rolling. I have plans for a caretaker support group facilitator to come speak to us about what relevant discussion she hears in the sessions. We’re a group of strong women and we can face looking at our lives from another perspective. The after-report blog post should be fascinating.

Thanks again to Dr. de Leon for her thought-provoking views on the care-giving issue:

Taking Care of Your Partner in the Midst of PD:
By Dr. Maria De Leon

My advice to not just weathering the storm but enjoying life in the midst of PD can only come about as a result of a united front from you and your partner. This is an incredibly tall order. You never dreamed that when you said those marriage vows: “for better or for worst…” it would actually come down to – “till PD comes around and screws up everything!”
How do we take care of our partners so they can not only take better care of us; but actually want to stay for the long haul?
Before we undertake the task of caring for our caregivers who are also our partners, we must fully understand that Parkinson’s is a problem of two people not one. When we first get a diagnosis of PD, whether we have been married or in a committed relationship for 6 months or 50 years, the reaction is the same- one of shock and disbelief. This initial shock is followed by stages of grief –denial, acceptance, anger, bargaining, and depression. The reason I placed out of order is because we don’t always go through all the stages and we may cycle back and forth between stages until we reach acceptance. Furthermore, our partners will also go through these stages at their own pace which may not at all coincide with our own present state of mind making co-existing and co-inhabiting in the same house extremely difficult, to say the least.
Marriage and relationships are very tricky and extremely fragile thing as we all know; throw in a chronic progressive illness such as PD and it’s anyone’s guess how things will settle. But, if you know how to care for your relationship and your partner- it can be as solid as a rock. Our partners should be the number one cheerleaders to provide us with the strength needed to keep fighting. Not an easy task, mind you! I have been married for 20 years almost as long as I have been a Parkinson’s specialist and for the last 8 years my husband and I have been dealing with PD in our lives. This does not mean however that your partners should necessarily be front and center with you from the beginning. In fact, I recommend that he not be your caregiver in the early stages, this comes from years of experience in dealing with chronically ill patients and their caregivers. This will keep your spouse’s and partners from decompensating and throwing in the towel.
In fact, my husband and I have been able to survive does far the ups and downs of PD, not without an incident or two, but mainly by maintaining our own independence and interests. He is in fact a silent partner for most of the time with the understanding that if I need him, he will be there. I do not ask him to come to PD meetings with me nor do I ask him to go to the doctor with me unless he volunteers. I don’t encourage the latter much because he then wants to treat me as someone he needs to provide care for rather than a wife or lover and it offsets the balance of our marriage and relationship. As a show of my love for him, I do my best to always look presentable at best of my abilities at least smell good, keep up with daughters’ schedule, try to maintain a tidy home which means having food available- does not have to be prepared daily and most importantly I try not burden him with my mile long list of problems- which believe me men do not like to hear- But, any man that loves and cares for his wife or partner will be in tune to her needs and try to ease her suffering even if she does not complain. My husband knows when I am hurting or ill and comes to my aid.

First, communication is of the out-most importance. From the beginning of diagnosis it would be a great idea to seek professional counseling from a pastor, psychologist, psychiatrist, marriage counselor or social worker both individually and as a couple; if having trouble coming to terms with the disease and what it means for your future as a couple, family, and individual. Ask your partner how they are feeling, how you can help? Relationships are a two-way street. Everyone focuses on the patient and tends to forget about those in the trenches providing care. Ask how you can help ease his burden. He will most likely smile and say there is nothing to do but will be extremely grateful that you asked.
Second, spend time alone pursuing your own interests. Encourage your partners to have their own support group. It is imperative that he as well as you have your own time alone to pursue own interests. I think this is one of the greatest downfalls which cause partners to become completely exhausted- not having any time alone or time to be husbands, lovers because we expect them to be our caregivers 24/7. Allow them to go out with their guy friends. I have heard that husbands are much more loving and attentive to their wives after hanging out with their other male friends.
Third, it is important to maintain short, intermediate, and long term goals as a couple and as individuals to foster dreams and ambitions. Life must go on despite PD. There are families to raise and careers to grow.
Fourth, if at all possible have other friends and family members be your caregivers to help take the burden of your partner in the initial stages of disease; because sooner or later they will have to assume responsibility for your care as your disease progresses. When you reach this state, they will be more willing to do it as well as more lovingly. If you need someone to accompany you, your friends or other family members can be the ones to accompany you to the doctor, support groups, travel companions, etc.
In the end, I want you to think of your partner as an empty box; a treasure chest of sorts where we usually keep all our precious things from the past, and our future dreams. We can only draw out of this box what we have taken time to put into it. So, if we never put any love, respect, gratitude, friendship, companionship, staying power, patience, joy, laughter, communication, and openness in it, when times get hard and we go to make a withdrawal we may come up empty-handed.