Caregiving Decisions for Aging Family Members

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by Elissa Lewin~
Now here is an area in which I am a pro. When I was 41, and my children were 2 and 7, my mother-in-law was diagnosed with Supranuclear Palsy, an ugly cousin of Parkinson’s Disease. Within a very short time we had to get her diagnosed, placed in a nursing home and her apartment cleaned out.

When my children were 8 and 13 (my mother-in-law had recently died), it became evident that my 90 year old father-in-law was no longer able to live independently.

The national “average” caregiver is 48 with kids and aging parents. We were already doing everything possible to support his aging in place – cooking, cleaning, medical appointments – but he was no longer physically safe. His Parkinson’s Disease made falling a constant risk. So he moved in with us, a living arrangement that lasted for five years.

Now my mother is 92. She moved four years ago to be closer to me. Although I had already been traveling to NJ twice a week to provide basic support for eight years, she needed more if she was going to continue living independently.

Mom now lives 10 minutes from me, I am over there almost daily for a check-in. Tuesdays remain “Mom Day” – a full day devoted to getting her where she needs to go and doing what she needs to do. I do her shopping, set up medical appointments, provide the transportation, and make sure she has dinner.

However, she also has had two major falls in the past 4 months, and she needs more help than I can provide. Recently, we started to use a home caregiving service. Kathy comes in three mornings a week to help Mom shower and to take care of some basics.

So here we have three elderly parents, each presenting very different needs and each requiring a different approach to caregiving. This provides a useful model for comparisons in decision-making.

Unlike becoming a caregiver in a crisis, aging can give us more time to prepare, but we have to pay attention and have the courage to face the changes that are happening. One of the hardest defense mechanisms to overcome is denial – either ours or theirs. In many ways, it is that denial that allows our loved one to keep going as well as they have, to soldier through a particular difficulty. However, it is not a useful way to plan for the future.

There are some basic questions that are useful to consider while exploring caregiving options.

What is your relationship with this relative like? Is this someone with whom you can spend extended time without anger or frustration? Is this person someone who appreciates what you do, or do they make you feel like it is never enough? Is this someone you will be able to bath, toilet, dress, feed without resentment on your part or theirs?

How will your life be impacted? It may mean reducing work hours, cooking different food, or modifying your home to accommodate them. If someone moves into your home, not only do you lose physical space, you lose emotional space. This can affect intimacy in your marriage and it can impact how your children perceive their home. It may no longer feel like a safe haven to them.

How will expenses be covered? Are there benefits available to help?Having a loved one in a facility will still require your supervision. This is less time intensive, but you have less control over their care. For example, many people don’t know about Aid and Attendance benefits from the VA for veterans and their spouses/widows. Check out this website for more information.

What is your financial situation? The average caregiver spends 12% of their disposable income on non-reimbursable caregiving expenses. Many tap into their own savings, putting their own retirement and savings for their own long-term care needs at risk.

How are you going to take care of yourself? As caregiving responsibilities increase, so do the negative physical and emotional effects. Of course, as your loved one is aging, so are you.

Remember you will need to stay connected with friends, continue to laugh, exercise regularly for physical and emotional well-being, eat well, sleep well (that’s a tough one), and let others take care of you when possible. Remember to take mini-breaks and complete respites to maintain your own well-being. See your doctors on a regular basis, not just your loved one’s doctors.

Know that the decision you make about care today is not necessarily forever. It should be re-evaluated regularly to balance what is best for you and your aging loved one. There are many books and resources available to help. These websites, Caregiving.com, Liftcaregiving.com and your local library or bookstore are useful next stops.

 

 

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About Elissa Lewin

Elissa Lewin is a Licensed Psychologist and a Licensed Marriage and Family Therapist. She has maintained a private practice outside of Philadelphia for 25 years. Her own experience as a caregiver led to her founding Nancy’s House, a comprehensive respite program for family caregivers. www.nancy's-house.org

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