Caring for an Ailing Spouse with Parkinson’s
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!
Give some thought to providing entertainment that your spouse can enjoy. Favorite movies on DVD can be enjoyed anytime. If your spouse enjoys reading, keep plenty of well-loved books on hand. Visit the library together! Make sure your spouse has adequate light, a comfortable chair, and glasses with extra magnification or a magnifier if necessary. A special support for books, magazines or a newspaper may be helpful. If short-term memory is a problem, consider options that don’t require remembering a storyline. The MGM series That’s Entertainment consists of songs and dances excerpted from movie musicals. PBS ran a series on National Parks that includes beautiful scenery that can be enjoyed without having to follow a story. Variety or talent shows may be good choices. As for books, consider episodic stories (such as James Herriott’s veterinary memoirs) that are light on plot. Picture books or audio books may also be an option.
Encourage friends and family members to visit often; especially the grandkids! Even if your spouse has difficulty communicating, he or she can enjoy the company and conversation of others. Your place of worship may have a home-visitation program as well, allowing your spouse to keep up-to-date even if he or she is unable to attend services.
If physical intimacy has been a regular part of your lives, let it continue. It is important for both of you. It shows your spouse that he or she is still a needed and desirable partner. Find ways to work around any inconvenience that such intimacy may involve. It’s a small price to pay for the emotional benefits you both will gain.
Your spouse should have a regular exercise program, if possible – either for rehabilitation or to maintain a level of strength and mobility. Speak to a physical therapist or doctor and learn what exercises are appropriate and how (and how often) they should be done. Provide suitable exercise equipment or visit a gym, if possible, to work with a knowledgeable trainer. Teach your children and grandchildren how to assist with the exercises. They’ll be pleased to help Mom or Dad, and you’ll get a break as well. (Other caregivers, if you use them, can help out also.)
Another area that should be addressed is keeping your spouse safe when traveling. Always use a seat belt and shoulder belt. If your spouse has trouble sitting up straight, there are car seats available for adults that may be useful. They have a four-point harness like a child’s safety seat, and will keep your spouse in a safe position for traveling and reduce the risk of injury should the vehicle’s airbag be deployed. A stool and a slippery covering on the seat may help them get in and out of the vehicle and be positioned for attaching the seat harness. If your travel plans include staying in a hotel or motel, be sure to request a handicapped-equipped room. You may want to carry a rubber bathtub mat and suction-cup safety bars with you just in case. They’ll provide an extra measure of protection.
Your spouse will want your home to be just as it always was, so that it seems familiar. This is especially important if your spouse has short-term memory problems or dementia. However, it is important to keep your home clean and uncluttered at all times. Remove extra furniture and decorative items that could be hazardous if knocked over (glass vases or china figurines, for example). Consider hiring a house-cleaning service to handle heavy cleaning, particularly in the kitchen and bathroom. Schedule a weekly appointment. It will be one less concern for you, and allow you to concentrate on care-giving.
If your home is unsuited to the demands of your spouse’s illness, you may have the option of relocating. If so, there are a number of features that you should consider: open spaces are much easier for maneuvering walkers and wheelchairs, as are wide doorways and short-pile carpets. Choose a single-story house (no stairs) and consider the use of ramps for access. If you can’t afford to move, you may want to talk to an expert about ways to modify your home to make it safer for your spouse.
As your spouse’s care becomes more time-consuming, you will find that you have difficulty getting everything done. Being responsible for your spouse’s care 24 hours a day is a heavy load to carry. You will require some time away from your spouse so that both of you have time to catch your breath. Check with social services agencies in your area to see what resources are available. (Your place of worship may have some suggestions also.) Consider engaging a part-time caregiver to assist, even one or two days a week for a few hours, so you can have some time to yourself. Adult daycare facilities are available in most areas, and that may be a workable option. If you choose to get assistance, talk with your spouse to make sure he or she understands the arrangement. When you leave your spouse in someone else’s care, make sure you commit to a time when you will come back and stick to it. Your spouse may become anxious otherwise, as he or she depends on you.
Be aware of what is going on with your spouse. Be alert for changes and they may be gradual or sudden, so you need to keep an eye on behavior, both physical and mental. Even an unusual odor may alert you to a medical problem that requires treatment. If you notice such a condition, SEEK HELP IMMEDIATELY. Your spouse may disagree, but you must trust your own judgment. Prompt action may be critical. Call 911.
As your spouse’s condition changes, you need to modify your caregiving to accommodate the change.
Making home care effective requires a commitment and input from both partners. If either partner cannot do that, don’t do it at all. Find someone or some place that can provide the needed care without letting it become a point of disagreement. Even under the best of circumstances, there will be challenges and frustrations that require attention. Do the best that you can with them.
Though no one likes to think about such things, you need to take care of some end-of-life decisions. Do you want a funeral? Cremation? A service? End-of-life planning is never easy, and having an ailing spouse can compound the difficulty. If possible, involve your spouse in the choices. Inform your family. Make sure you put everything in writing. Update your will, if necessary, to spell out your decisions. It is conceivable that the care you provide for your spouse at home will not be enough eventually. Conditions change, people change and it just may not work any longer. Perhaps the needs of your spouse become too great to manage, or perhaps the illness progresses to the point that medical monitoring is necessary. It is much better to have thought about this possibility in advance and have made a decision about how to handle that situation before a crisis arises.
It’s a good idea to do some research. Planning ahead will make the process less stressful for you and your spouse. Check out the long-term care facilities in your area. Look online for ratings and feedback about them. Ask doctors and social service providers for their advice and input to help you make an informed decision. Meet with customer service representatives from the various facilities with a list of questions.
Visit prospective care facilities and talk with residents and their families.
- Is the home clean, well-lit, and inviting?
- Observe how the staff treats its residents.
- Is there enough staff to manage the facility and care for the residents?
- Does the facility offer a variety of appropriate activities on a regular basis?
- How is the food?
- Does the staff provide feeding assistance if necessary?
- Is the staff able to supervise bathroom visits, or provide other personal grooming services?
- What is the policy about taking a patient away from the facility for the day? (Is a doctor’s approval required?)
- What about visiting hours?
- How will your spouse feel about living there?
There is nothing easy about the decision to move your spouse into a long-term care facility, particularly since there may be little or no chance that he or she will be able to return to your home.
Caring for an ailing spouse is a major responsibility, but it can also be very rewarding. You may find yourself (as I did) feeling closer to your partner than you ever had been before. When there is no more care to be given, the best that you can hope for is the comfort that you did everything you could.