Caring for a Spouse with Disabilities

How do the relationship roles change when caring for a disabled spouse?

When a spouse suffers from a physical or mental injury that leaves them disabled and unable to perform at their optimal ability, most often the relationship between spouses will inevitably experience change. As the affected individual is no longer able to perform the responsibilities they once did, this task will then fall on the other spouse and they will be put into a situation to take care of many more roles and responsibilities than ever before. This can leave the caregiver feeling exhausted, stressed and overwhelmed at times.Woman pushing disabled man in wheel chair

Depending on the level of cognitive functioning of the affected spouse, the relationship roles will vary greatly. The spouse that is offering care to the other spouse may find the role gratifying and rewarding, but it also can make the caregiver resentful, lonely, and hurt. Furthermore, the more complex the care requirements are can also take a greater toll on the caregiver which can create more stress and a less satisfying relationship. It may feel unfair, exhausting, and frustrating to be the spouse that takes care of the disabled spouse.

How is self-esteem affected when you are disabled?

It is important to bear in mind that when a person becomes disabled, depending on their cognitive awareness, a grieving process is anticipated. All people grieve in different ways and the emotional impact of acquiring a disability is great. Self-esteem is how we value ourselves, and our self-worth. For an individual suffering from a disability it makes them aware that in some areas they are not performing at the same level or functioning as others or as they once were. While the responsibility of taking care of a disabled spouse may be great and hard to deal with at times, it is important to speak with caution and encourage the positive aspects of your spouse. Part of the job as a caregiver is to be a cheerleader to keep your spouse functioning at their highest level and to contribute to positive self-esteem.

What type of support is available for persons with disability and their spouses?

Many people in the community suffer from disabilities that affect not only them, but their spouse and the entire family as well. Research local resources in your area such as support groups and self-help groups where you can communicate with other couples that are going through similar issues. You can also find support groups, chat rooms and forums online that are completely dedicated to connecting with other caregivers and their disabled spouse. To be able to identify and relate to other people experiencing this situation will strengthen your relationship and offer encouragement and support. Other benefits are knowing you are not alone and learning helpful tips and advice on how to deal with your situation.

BoyfriendIn some cases the disabled spouse requires a significant amount of care, which may leave the caretaker in a situation where they are no longer taking care of themself. It is important to know there are respite care services available that can take over care for a short time, so the caregiver can take some time away from providing care.

Is at-home patient care appropriate for a spouse with a disability?

In-home care is a preferred and rapidly growing division of health care. Patients will always be most comfortable in their own home environment and will choose at-home care when possible. One of the draw backs to in-home care is cost. Depending on how much care is required, the cost of at-home care can be quite expensive and add up quickly.

Depending on the level of care required by the disabled person, home care may not always be the best fit. Many times the spouse caregiver may have work and other obligations that keep them from being in the home at all times. If the person who is disabled requires a great deal of assistance or even 24-hour in home care, this may not be a feasible option for many.

What types of assistive devices are available for the home?

From wheelchairs to hospital beds, there are numerous options for adaptive equipment that can be used in the home setting to make caring for a loved one with a disability easier and more practical. Some of the available adaptive equipment you can find include raised toilet seats, lift chairs, bedside commodes, shower chairs, handle bars, hospital beds, walk-in baths and more. It is also a good idea to always have an emergency device such as a life alert worn by the spouse with a disability so that in the event of an emergency, help is just a click away.

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How do I know what level of care is appropriate for my loved one?

Woman With A Gift For His Handicapped HusbandThe person who is experiencing the disability along with whoever is with them most of the time will have the most accurate idea of how much and what type of care is needed. Be sure to speak with the physician for the disabled spouse who can give you an expert opinion on the care needed by your family member and their recommendation for care options.

Does my loved one need full-time nursing care?

As mentioned above, there are some people that require around the clock care. If your loved cannot be alone and requires a significant amount of assistance, then a full time nursing facility may be the best place for them.

Can my loved one maintain independence in assisted living?

Assisted living facilities are a great option for those individuals that require some care, but still can perform many day to day tasks independently. For example, if your loved only needs assistance with meal preparation or laundry services, then assisted living may be a good option. There are also assisted living facilities that help with more involved care such as toileting and bathing. Set up with apartment style living quarters, assisted living allows a great deal of independence and privacy.

What types of 24-care facilities are available?

Nursing facilities will vary greatly in terms of services they provide. You may be looking at assisted living for a disabled family member or even a skilled nursing facility. When you start looking at options for facilities be sure to find out exactly what services are provided by each facility so you can find a facility that is ready to meet the needs of your loved one.

Will insurance/Medicare pay for a nursing home stay?

Insurance and Medicare programs will generally help fund a short term nursing home stay, depending on qualifying factors. When it comes to long term nursing home placement Medicaid has programs in place designed to ensure permanent placement coverage for all disabled individuals that require long term care. It is important to look at benefits provided by your insurance or Medicare/Medicaid provider to understand what services are available to your loved one.

How do I know which nursing facility is right for my loved one?

With all the options available it can be overwhelming at times. Do not be stressed, just be sure to explore all options and ask many questions. Find out exactly what services and amenities are offered so you can be sure all the needs of your loved one are met.

How to talk to my loved one about 24 hour nursing care?

This could likely be the most difficult conversation you have ever had with your loved one, but also could be the most important conversation. It is absolutely vital to keep the spouse that suffers from a disability as much involved as possible with all steps of the decision making process. Their life will be affected dramatically to move into a full time care facility, and the more ongoing love and support from family members, the better the transition will progress.

Contributing Authors

Kelli Wilson, RN
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James Conte, RN, BS Nursing, BS Pharmacology
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    Miranda Booher, RN, ACLS Certified, BLS Certified, Tx Certified
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      Carolyn Falconer-Horne, Ph.D. Candidate
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