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Caring for a family member in hospice: stress for couples

Hospice caregiving can stress relationships

By Patty Ayers

Marriage can be difficult in and of itself without the extra added stressors that caring for another can add.

Routine of Caring

During this last visit
my mother tells me
that in their 55 years of marriage,

she and my father went to bed
angry only once,
the day she told him

she just could not care
for this mother any longer,
not after the last stroke

and broken hip.
I imagine the fight
between them, my mother

turning her back to wipe
the counter, my father’s uneasy
justification of injustice,

the affliction of one man
so that others may serve,
as I suppose he thought

my mother should serve
his mother, hand to mouth,
as my mother is serving him

now, not yet giving up,
managing his obsessive motion
by setting him walking

in the kitchen
like a mechanical toy,
back and forth, making

the same sharp corners
around the refrigerator
like the Marine

he was and was not,
and so his oatmeal congeals.
In the morning, she won

but she doesn’t say how,
and my father took his mother
to the nursing home where he

visited her every day until she
died. My mother explains
that she is managing my

father’s nightly leaks by not
letting him drink after supper.
A man does not live

by bread alone. She does not
want to give up. She dries
the cups and settles the towels.

Yesterday he
said again please,
don’t put me away.

Lois Marie Harrod, reprinted with permission of the poet

Many of you may be able to relate to portions of this poem by Lois Marie Harrod as she poignantly expresses her and her family’s experience with Alzheimer’s disease.   In her book of poems “Spelling the World Backwards” Harrod explores her father’s diagnosis of Alzheimer’s disease.  This poem stood out as a wonderful example of how caring for another person has had an impact on not only the primary caregiver, but on the whole family unit.

As you may or may not know, marriage can be difficult in and of itself without the extra added stressors that caring for another can add.  Recently I met with a couple who had been caring for her mother in their home for the past eight years. “Pam” said that one of the most difficult parts of caring for her mother, “Betty,” is trying to find alone time as a couple.  Her spouse “Mark” cares for his mother-in-law during the day while Pam is at work.  Mark has his own challenges with a permanent disability and said that by the end of the day he is exhausted and just needs to unwind. Betty is physically able to walk around and perform some activities of daily living unassisted, but she still needs assistance with toileting, getting dressed and needs to have her meals prepared.  Mark said that most of the time Betty spends the day in her room and will call him when she needs anything.

Last time I visited this family I noticed tension as soon as I walked into the house.  I asked Mark if there had been a problem prior to my arrival, and he said there was nothing new, and some days she’s more demanding than other days.  When I met with Betty she said that she feels like a burden and does not want to bother Pam and Mark more than she already does.  She also said that Mark is always so kind to her but she can tell that caring for her is difficult on him so she stays in her room, “out of the way.”

As you can see, this situation is not only difficult for the caregivers but it is also difficult for the one who is receiving the care.  Even if the person, or sometimes persons, being cared for seem unaware of their surroundings, they can still absorb tension and stress around them.  So what are some of the things you can do to help each other reduce stress and regain time together to be a couple?

First, let’s explore some of the reasons that may add to the tension and stress. One of the feelings that most caregivers express to me is fear.  This fear can be a fear of leaving their mother or father with a stranger or somebody who does not know their routine.  Or it can be fear that their parent will feel afraid if they are left with someone unfamiliar to them.  And finally they fear the obvious which is their parent may fall or will be harmed in some way.

Another feeling that spouses of caregivers will reluctantly share is the feeling that they have lost their partner to the task of care giving.  The reason I say “reluctantly” is because there is a certain amount of guilt associated with this feeling of abandonment because they say they feel “selfish” for thinking of themselves, as they know how dependant their in-law is on their spouse. Some of the other feelings are anger and resentment.

One other thing to consider is the disruption within the household that caring for another may cause.  If you are caring for another inside your home, not only do you have to make proper accommodations for that person, which can put a financial strain on your budget, but the disruption in the normal flow of things can be difficult.  Getting used to your loved one’s individual habits or routines can also be a challenge for the whole family.

Here are some suggestions that may make it easier to survive:

  • It’s important to remember that your loved ones deserve to be respected and loved and to live in a safe, comfortable environment, but your time is yours to delegate. They are not entitled to all of your free time.
  • Try not to keep your feelings to yourself.  Keeping open communication with your partner is very important because when feelings are acknowledged, you can begin working on a solution together.
  • If the stress is too much, you might consider asking family members or friends to help out for a few hours a day, if you can.  Hire a paid caregiver for a few hours a day or find volunteer help through organizations such as churches or religious communities.  Sometimes the Veterans Administration can be a source if your loved one or their spouse served in the military.
  • Consider adult daycare if your loved one is physically and cognitively able to attend.  There are some government or county programs that will pay for it if your loved one qualifies.

Finally, remember that you are not alone.  As you know since you are on this site, there are many support groups (both online and local) available to you.  Of course support groups are good because they allow a person to feel supported emotionally; they also get you in touch with valuable resources.  I don’t think there are any quick and easy solutions out there, but hopefully a combination of things may help alleviate some of the tension between you and your partner topped with a whole lot of patience.

2 Comments Post a comment
  1. it is not a spouse here, but a brother, but i can relate to everything that was said. thank you for being so understanding…..

    September 13, 2012
    • Terry,

      Thank you for your comment! My thoughts are with you as I can only imagine how very difficult it must be at times trying to balance having a life outside of caring for another.

      Patty

      September 13, 2012

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