Category: Helping Hands Blog
Published: Monday, 18 May 2015 15:08
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elderly coupleWhen the Person with a Disability Outlives the Caregiver

It’s a sobering thought, yet, according to, 30% of caregivers do not live longer than the person they are caring for. There are many diseases, injuries or illnesses that may not result in early death, thus causing a potential quandary. In conversation the other day, a person told me that they are about ten years older than their spouse. Generally people in his family have died in their 60’s or 70’s, however, their spouses’ family commonly live into their 90’s. If statistics hold firm, the possibility is there for the spouse with the disability to live as much as 30 years longer than the care-giving spouse.

 Even without age differences or the probability of an early death from disease being considered, an accident can happen to a caregiver at any time. The saying goes, “Life is short and accidents happen.” Just as a responsible adult should prepare a last will and testament or put funds away for retirement, so too should a caregiver develop contingency plans in the event that they are no longer capable of giving care to their loved one.

Contingency plans should start with a written action plan that includes a detailed description of the normal daily routines, any special treatments, medicine schedules and doctor’s information. The more detail provided in the action plan the easier it will be for someone to step into the care-giving role with less upheaval to the person receiving the care. In addition, writing out a plan will bring to mind other considerations that need to be acted upon such as living arrangements, notification of family and so on.

In many cases the caregiver is also the financial person in the household. Writing down bank and savings accounts and how to get access to them would be extremely important to provide continuity of care, especially if a person needs to be hired to assist during the transition time. Having a highly trusted third person on the account to facilitate immediate access to funds might be helpful.

Living arrangements are extremely important to consider. Will the ill spouse be capable of living completely by themselves if another family member cannot step into the caregiver’s role? If not, pre-arrangements should be made and documented in the action plan. Moving to an assisted living facility, nursing center or relative’s home may be considered along with the possibility of hiring a full-time or part-time care-giver. In the case of a person needing minimal help, some people have found that renting a room to a responsible young adult with a squeaky-clean background for free or low charge with the condition of providing the minor assistance as needed is much cheaper than hiring a professional medical assistant. This idea works well in college towns.

Another “most important” factor is deciding who will be the primary person responsible for continuing care for the person with a disability. Although this person may not actually provide care, they would be expected to coordinate the care or at least the transfer of care. This person does not even have to live close-by. They just need to be capable of insuring and confirming proper care is continued.  It is not good enough to simply put the surviving person in a nursing facility and assume that they will be well-taken care of. See our previous blog article on being an advocate!

If, by chance, the caregiver has knowledge that they are likely to pass before the disabled person, preparation for the event is important for both people. In one case, the elderly couple began going together to a senior day center at an assisted living facility for a couple of years prior to the caregiver’s death. This provided a smooth transition for the living spouse to quickly move to the facility and still be among friends and an environment she had grown accustomed too. Preparation is even more important is the surviving person has dementia.

Sole caregivers undertake a massive responsibility as they care for a loved one. Unfortunately, sometimes the situation ends prematurely. However, with some planning and foresight a bad situation does not have to become worse.  Providing for continuity of care will produce significantly less stress for both the person with a disability as well as the remaining family and friends.





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