When my beautiful mother suffered an insidious stroke that led to her death thirteen months later, my life crumbled. I found myself immediately enrolled in the School of Hard Knocks for a graduate degree in desolation. This event pushed me into the role of caregiver for my much-loved mother as she approached the end of her life. I’d like to share five of the most important lessons I learned during that continuing education.
Lesson #1: Don’t wait for a crisis to start preparing.
It is much easier to replace the engine of an airplane when you are not flying it. Try to plan ahead, while your parent is still reasonably healthy and able, for the day your parent might need your assistance managing some or all aspects of his or her affairs. I was lucky that my mother listed me as owner on most of her bank accounts. I had access to her passwords so I could take care of a lot of things online. I was also fortunate that there was a short period after the stroke when my mother retained enough capacity to give me medical and financial power of attorney.
There were still many other situations that I wish we had streamlined before she got sick. My mother had three sources of income, each direct deposited into a different bank account. She had at least seven different bank accounts in three different financial institutions, only one of which had branches anywhere near where we lived. I don’t think anyone needs that many bank accounts. Reconciling all that financial gobbledygook when I had to apply for Medicaid for her was a huge, ugly snake pit. She also had several small life insurance policies. I didn’t know the details on any of them. I had to cobble together information from various pieces of paper to even identify which companies held the policies. To this day, I don’t know if I found all of them. Also, she had my father, who died over 20 years ago, named as the beneficiary on a policy. If we had just made sure that I had the information about all policies and all the policies had uncomplicated living beneficiaries, things would have been much easier.
The concept of being prepared isn’t limited to financial matters. Try to have the relationship you want with your parent before they become ill or incapacitated. If there are things you need to say and wounds you need to heal, do it sooner rather than later. Give yourself and your parent the gift of intimacy for as much of this life as you can. Sometimes that isn’t possible. If there are good reasons why you can’t have the relationship you want, come to terms with that reality and accept it. Let go of the regrets. That way, at least you can give yourself the gift of peace when your parent is near death.
Lesson #2: Consult with an elder law attorney.
When my mother first got sick, I spent a lot of energy worrying about money. It seemed vaguely shameful to be concentrating on money when my mother was battling to maintain some semblance of her life.
Still, the problem of how to pay for care is a very real one. Medicare and most medical insurance will pay for the initial hospital stay and some portion of a limited number of days in rehab. However, it does not cover residential care, such as an assisted living community, skilled nursing facility, or in-home health assistance. I spent many hours in sleepless nights pouring over Medicaid websites. I worried that, because my mother had income slightly above the threshold for Medicaid eligibility (but far, far below what residence in a skilled nursing facility would cost), she would not qualify for assistance. While I was willing to subsidize the care, even my entire income combined with hers would barely pay the nursing home bill.
When I met with the elder law attorney, it was a huge relief. There are ways to work with the Medicaid system to get financial aid. If a person doesn’t meet the most basic income and/or asset limitations, you may have to address additional safeguards, but patients who need care and can’t pay for it do get help.
Lesson #3: Everybody can only do what he or she can do.
Everyone has different strengths, capabilities, and weaknesses. Dealing with the decline of a parent is incredibly stressful and difficult in so many different ways. Try to be the best version of yourself. Make your best effort to do all you can to support your parent, but remember nobody can do everything. Be gentle with yourself and others. It is counter-productive to feel guilty or resent other family members because you wish things were different. First of all, no matter what, there is nothing anybody can do that is likely to change the outcome of the situation. Secondly, there are all kinds of valid, true reasons why people just can’t do things.
Also, you don’t always know what the right thing to do is going to be. I spent months feeling terribly guilty because I moved my mother to a skilled nursing residence. That day was the worst day of my life. My mother and I have always been closer than any other mother and daughter I know. There is no doubt in my mind that she loved me more than anyone else in the world. And I left her at a nursing home. The shameful truth was that I just couldn’t handle taking care of her at home.
It turned out that the nursing home was the best decision I could have made. She got wonderful professional, around-the-clock care. Also, when the nursing staff started taking care of her physical needs, I was free to be what only I could be- a daughter. I could spend my energy loving her and letting her love me, which is truly all she needed from me.
January 31, 2018 at 4:44 pm
This is a great summary of what a person can do to be prepared. For my family, since I have only one son, it is easier to plan my living will etc., so they can find everything in one place. I have a black box with all the final paperwork for them to review and see where my paperwork is and to review these with them.
I have all that prepared,but to this date, they have not tried to review these papers to be prepared for the inevitable one of these days. One of these days I hope to review the little black box with them.
February 1, 2018 at 4:26 am
I am dealing with this same situation with my 96year old mother. Thank goodness i have 6 siblings and we all take turns sitting with her 24/7. We have noticed a small decline where she is forgetting how to do things and just take it as it is. We do not wish for her to be in a home as she wouldnt last a week there. I have the feeling we are going through what a lot of people go through, but we accept it as she is our mother. I have done everything i can to make an easy transition for my son when the time comes for me to go in a home because of my in-laws. Nothing written down when the time comes. Thank goodness my mother had the wisdom to do that and put it in a trust.
February 1, 2018 at 2:07 pm
It is a difficult conversation, I know, Lois, but I’m sure your son will appreciate the information later on down the road. I feel like my mother tried to tell me more before she got sick and I think I probably resisted the discussion, not wanting to think about a time when she would be so compromised. I wish I had been more open and paid more attention. It would have helped later.
February 1, 2018 at 2:12 pm
Much love, peace, and strength to you on your journey with your mom, Susie. It is so unbelievably hard. I am sure you are being a wonderful traveling companion to your mother. I often tried to encourage myself by remembering that most people do have to face similar challenges watching a parent slowly decline. It helped a little bit to realize it must be bearable because so many people do bear it, but I don’t think life is ever the same after going through that experience.