“I am spending so much time caring for him that I can’t take care of myself.”

A few days ago, I overheard a conversation between two women who I think are in their  80’s. Evidently, the husband of one of them has been ill for about a year. It sounded like among other things, he may have diabetes mellitus that has progressively caused deterioration including retinopathy (impaired and blurry vision) (“he can barely see” and “I have to give him his insulin now”), skin deterioration and wounds that don’t heal (“I have to call the doctor anytime his skin changes color”) , and peripheral neuropathy in the feet (“he can hardly walk” and “I have to stay nearby him all the time.”). It also sounded like he had some kind of heart condition so that any kind of exertion is now fatiguing. She told her friend that she was utterly exhausted and had medical problems of her own that needed to be treated but because they would require convalescence, she just felt she had to keep putting them off.

Caregiver spouses need more support. People shouldn’t have to make such choices. There is a tremendous need for hospital discharge planners and even doctors in the community to provide information and guidance about the availability of services and the benefits to the both the family caregiver and the patient. Medical insurance plans generally will not provide in-home home health maintenance services, and this level of health care is seen as somehow different than curative health care. Patients in the community are often left to cobble together their own arrangements. There are endless choices,  and it’s emotionally complicated for the caregiver.

In-home caregiving can be an all- consuming responsibility. The caregiver may find it impossible to go out to do errands or handle their own appointments. The caregiver may have no time during the day that they aren’t on duty. They may be wakened during the night to care for the patient.

There are many ways for people to get help with this kind of complex inhome nursing care, but the process can be daunting and emotionally difficult. Some people just aren’t aware of the options. Other people have trouble getting comfortable with the idea of a stranger being in their home every day. Still other  people feel that no matter how great the personal sacrifice, no one would provide as good a level of care as they could provide to their loved one.Yet, the patient is at risk when the family caregiver’s health and mental well being are fraying.

For patients whose medical needs are moderate but who require supervision and cueing due to dementia and memory impairment, many assisted living facilities can provide periodic short stays that are called “respite care.” For patients whose medical and nursing needs are more complex, there is no reason they couldn’t receive that care in a nursing home. Of course there is a cost, but if the caregiver is on the brink of collapse, the cost could be well worth it. There is also a state funded respite care program. It can be contacted through local social services agencies and visiting nurses agencies.

Home care can be arranged  to supplement what the family member provides. ltc_guide   An aide can be hired for a predictable schedule such as certain afternoons every week from 12 to 4. Agencies will always require that there be a block of at least 3 hours per day nd that the schedule be predictable. Having a system like this will enable the caregiver to make their own appointments with doctors, dentist, shopping, and so on, knowing that their loved one is protected and not being left alone. Also in this way, the caregiver will be spared the hassle of making multiple phone calls to friends, family, church volunteers etc to see who might be available on a certain day at a certain time so that the caregiver can get out and take care of something that’s necessary. Some caregivers are reluctant to commit to a regular schedule with an agency because they feel they may be wasting money if there’s no need to go out of the house for an appointmen t or errand on that day. However, my clients who have integrated regular supplemental home care find that it gives them a cherished break, and they feel they are less stressed and less tired when they are “on duty.”

If you are a family caregiver, there are many places you can turn to for support and respite. By taking good care of yourself, you can be a better caregiver for your loved one.

 Call us for legal assistance with elder care planning and government benefits programs … 732-382-6070

 

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