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Caring for an Ailing Spouse
with Parkinson’s
By Richard N. Sater

(Page 1 of 2)

The choice to provide care at home marks an important change affecting the lives of both partners. If you choose to be the primary caregiver for your spouse, you will find it is one of the most demanding tasks you’ve ever tackled. It is a major commitment, and not one to be taken lightly.  Once you make the choice to provide in-home care, it is entirely up to YOU to help your spouse get as much out of life as possible. 

The first consideration is attitude – not only of the potential caregiver, but of the ailing spouse as well.  If either of you considers the task to be a chore, it will probably not be done very well and neither partner will be satisfied.  For me, it was something I wanted to do for the woman who had given me so much love over the 54 years we spent together.  By making a commitment, I mean doing everything that you can for your spouse.  You make sacrifices as they are called for.

First things first. It is important for both partners to have Living Wills and Medical Powers of Attorney in place. (These documents are required to be witnessed and notarized.)  The first one defines the limits on health care that either partner is willing to accept in a crisis situation.  The second defines the procedures for transferring health care decisions to another party when the incumbent becomes incapable of making those decisions.  These documents take the need for critical decisions out of the hands of any caregiver.  It is important that all outside care providers are aware of the Living Will stipulations and have access to a copy of those instructions.

Regarding the practical, hands-on aspects of home care, first and foremost is providing a safe environment for your ailing spouse.  Use professional caregivers as a resource to determine the need for additional safety devices in your home.  (Such resources are available in most communities.) You may need to install safety bars and handrails in strategic areas – like bathrooms, stairways, areas across from open stairways, and other potentially hazardous areas.  A fold-down seat in the shower can make bathing much safer.  Eliminate tripping hazards such as loose carpets, extension cords, and low furniture. 

Single-floor living may be the best arrangement, but is not always possible. If your home is on multiple levels, consider installing a stairway lift to ensure safe passage from one floor to another. Consider using alarms to detect unsafe actions, such as getting out of a chair or bed without assistance.

A baby monitor or intercom can be useful to hear your spouse when you are in another part of the house. Special locks or gates for stairway doors or entries could be useful, as could arming your home security system (if you have one) to sound an alarm if an outside door is opened.  Think about how to keep your partner safe at all times.

An ailing spouse is likely to have increased medical needs, and it is important to manage doctor visits and medications. Schedule regular appointments and provide assistance in transporting your spouse to and from these appointments.  Sit in on the doctor visits and make sure you get satisfactory answers to any questions you have. Maintain adequate supplies of all necessary medications and make sure you administer them as directed.  Use a pill container that divides medications by the day of the week (and the time of day) and prepare everything in advance. If your spouse has trouble swallowing pills, try crushing them and mixing them with pudding or some other soft food. (Some medications cannot be crushed and administered this way – ask the doctor.)

Once you make the decision to be the primary caregiver, you must make sure to take very good care of your own health. Get regular physical examinations, a yearly flu shot, take your medications as prescribed, and exercise. You cannot help your spouse if you are ailing yourself.

Taking care of an ailing spouse may mean taking on a number of other household chores as well, including shopping for groceries, planning and preparing meals, doing laundry and housecleaning. Additionally, your spouse will likely need assistance with personal care – using the toilet, bathing, dressing and so on.
As illness closes in, the world becomes smaller and more restricted, which can be very frustrating for both of you. To the extent possible, try to see things from your spouse’s perspective. Be as patient and compassionate as you can. Adapt and improvise when you have to and you will have the best chance to overcome problems as they arise.

Mealtime can present some challenges. Remember the foods that your spouse especially enjoyed, and do your best to include those favorites regularly. If swallowing becomes a problem for your spouse, a speech therapist can give you some guidance.  You may need to puree food for safe consumption. Purchase a small food processor to help you out. (Baby food is an alternative also.) You may need to add a thickener to beverages, readily available at most pharmacies.  Specially-designed eating utensils and dishes are available that make it easier for your spouse to feed him- or herself, though you may need to feed your spouse at times. Use a bib or apron to protect clothing. Your spouse may need to eat small meals more than three times a day.  Keep favorite snacks on hand.

Keep an eye on your spouse to see how well he or she manages to accomplish routine activities like using the toilet, bathing, getting in and out of bed, dressing, just getting around. Be aware, and be ready to offer assistance if there appears to be a struggle.

Look for activities that your spouse can manage so that he or she feels useful around the home. There are a number of tasks that may be appropriate, such as sorting and folding laundry, drying dishes (nothing too heavy or fragile), setting the table, dusting, and so on. Even if your spouse is wheelchair-bound, such tasks may be possible with your help.

As often as possible, use your spouse as a resource – ask for advice or input about performing household tasks, planning meals, shopping for groceries, and so on. As much as possible, keep your spouse involved in your daily life, and certainly involved in any decision that directly affects him or her. Your spouse may not be able to dress without assistance, but he or she can still choose an outfit. Regular visits to the barbershop or salon for a haircut or style can do wonders for morale. Be creative – don’t get hung up on the way things were always done in the past. Communicate!


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