- September 14, 2020 at 1:21 pm #2182Dr. Eboni GreenParticipant
We were not prepared as a family when my father-in-law was diagnosed with cancer. Initially it was the shock of the resurgence of the cancer. Later, it was all the decisions that needed to be made regarding his needs and his preferences. The turning point for getting on the right track occurred when we had a family meeting that was facilitated by the nurse practitioner.
Three years later my mother-in-law suffered a stroke after contracting a terrible strain of the flu. It was certainly distressing while she was unresponsive and through her recovery. However, being informed by dad’s situation, we made sure we knew her wishes. Together we were able to gather her personal information and my husband the designee to communicate her care preferences.
If you had not done so you may find it helpful to Develop a Plan for the future, just in case your loved one needs care. You may also choose to make your preferences known as well.
Are there any tips you might share about how you and your loved one communicate about care preferences?September 22, 2020 at 11:01 am #2262donnamariejohnsonParticipant
I am so grateful that you invited me to this private forum, Dr. Eboni Green. Thank you, again.
In terms of developing a plan, my husband took time to get help with creating his will and setting up all needed insurances while he was still working. As a result, we’re in a much better position to receive the help we need now that he has left work due to his disability. So, that’s the first thing, ensuring you have what you need while you’re still able to get it… most insurances for disability are not available to you after you are already disabled.
After he became fully disabled, we were told that he needed to create his power of attorney and also advanced healthcare directives so that if he should become incapacitated, I and another designee (my mom) would be able to help him. Because he has aphasia (speaking challenges) and challenges with using his hands, the POA has proved to be invaluable. Our church’s legal ministry provided all of the paperwork and notary and our neighbor came over to be a witness, so we were able to get this done for free at home.
Since obtaining the POA, I’ve been able to handle all of our financial and health matters, including social security disability, disability insurance, and life insurance concerns on my own without them having to verify that he approved of me helping him with each phone call. Just remember to fax/email/upload it to all providers and companies so they can keep it on file.
The process of handling my husband’s disability has been very progressive since even before he was diagnosed in 2012… from undiagnosed but having problems that concerned us, to diagnosed and depressed about it, to accepting it and dealing with it quietly & privately while he continued to work full-time, to having it be common knowledge because he passed out in front of a crowd and then was required to use an assistive device (walker-collator) at work, to then needing to leave work due to dementia, and to now being in an electric wheelchair so that he can get around faster.
This process hasn’t been easy, but what makes it better is to stay present to my feelings, have a plan for taking care of myself, and most importantly, having a great support system to help us all through this. Our support system includes our 3 teens who help their dad with his meals and drinks and laundry sometimes; my mom who is my husband’s respite caregiver which frees me up to handle family business for my hubby and for the kids, as well as to take care of myself; and support groups specifically for spousal caregivers which have been an invaluable resource and encouragement for me.
Of all things, the support group for spousal caregivers has been just as vitally important as my mom helping caregiver for my husband (and she’s being paid for this through a program by Medicaid/Medicare).
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