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Caring for an Ailing Spouse with Parkinsonís
By Richard N. Sater

(Page 2 of 2)

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 donít require remembering a storyline.  The MGM series Thatís 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 Herriottís 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. Itís a small price to pay for the emotional benefits you both will gain.

Your spouse should have a regular exercise program, if possible Ė 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. Theyíll be pleased to help Mom or Dad, and youíll 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 childís safety seat, and will keep your spouse in a safe position for traveling and reduce the risk of injury should the vehicleís 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. Theyíll 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 spouseís 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 canít 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 spouseís care becomes more time-consuming, you will find that you have difficulty getting everything done. Being responsible for your spouseís 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 elseís 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 spouseís 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, donít 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.

Itís 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 doctorís 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.

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