The Caregiver’s Bucket List


"The Bucket List," a 2007 movie starring Jack Nicholson and Morgan Freeman, contemporized the old term "kick the bucket," which had long been common slang for death. Now, people of all ages often use "bucket list" in a light-hearted way when they refer to what they'd like to accomplish, either in the short term before an important life event or in the long term of their life span.

Caregivers and their loved ones are on the serious end of this spectrum. Yet, they, too, may develop a vision for how they would like to spend the time that they have left together. Deciding what caregivers and care receivers would like to accomplish together while the ill person can still enjoy life is tricky and highly unique to each pair involved.

First and foremost is communication. Some terminally ill people withdraw so far into themselves that family members are fortunate if they can convince them to simply take prudent legal action. Assigning a financial and health care power of attorney (POA), and drawing up a will for disposal of property are necessary, if emotionally unsettling, steps. Realistically, individuals with this type of personality aren't likely to spend a lot of time contemplating lighthearted adventures.

That being said, there are people diagnosed in the early stages of Alzheimer's disease or who are in a temporary remission from cancer or another ailment who can make plans to creatively use the time that remains. They may view a focused plan as a way to counter any reluctance to face their own mortality, or they may simply have a resilient personality and want to get the most out of the life that they have left to live.

If you, as a caregiver, are blessed to have time with such a person, how do you enhance the last years or months that your loved one may have before he or she becomes too ill to make some dreams come true? And how do you get some of your own needs met, as well?

Begin by planning ahead

My first suggestions may sound rather joyless, but these steps are necessary to pave the way to pursue other, more pleasing goals. Thoughtful legal planning of the type mentioned above is vital. It's also important to ask your loved one what his or her preferred care plan would look like, as time goes on.

You may want to tour nursing homes together, in case such care becomes necessary. You may want to discuss hospice care and even talk with the hospice organizations in your community. Another important factor to touch on is how best to take care of yourself, the caregiver, while your care receiver is still able to understand the strain that caregiving can put on a person. This is the time to explore the true feelings of the person who will receive care as well as the feelings of the person who will be the primary caregiver, and attempt to accommodate both to whatever degree is realistic.

This is also a good time to consider if it's possible to bring fractured families together and mend fences in important relationships. You can offer to assist, if this is part of your loved one's goal, or professional help can be considered.

Building your ideal list

While completing the serious work, you can start to create a realistic vision that can help both of you experience life in as robust a way as possible.

If you and your spouse have always dreamed of taking a cruise, but have put it off because of practical issues, then now may be the time to do it. This may not be a realistic goal for many, either financially or because of health issues, however, the dream can be tailored to fit reality. Would a trip to Las Vegas, Sea World, Old Faithful or New York City be realistic? How about visiting a bed and breakfast in your old home town, making sure to visit any remaining landmarks, such as an iconic diner or historic park?

My belief is that while the caregiver may have a bucket list that he or she would like to pursue, the care receiver is the one who has the final word. If you desperately want to go on a cruise with your husband before he dies, but he has always said he'd hate a cruise no matter what, try to find some middle ground. After all, the idea is to enjoy these last years or months together, not to force your loved one to fulfill your dreams.

The idea behind a bucket list is to focus on what is positive and use the time that is left judiciously, rather than randomly slog along and then be surprised that your time to enjoy things together has evaporated.

Document your shared adventures, large or small. Pictures, videos and trinkets purchased or collected from bucket list adventures will be important to your loved one, of course. However, this type of reminder will remain precious for you and the rest of the family, long after your loved one has let go of life. These tangible reminders of quality time spent together will warm your heart and provide something physical to hold on to.

Even the youngest person will likely revise his or her bucket lists as years go on, so don't look at the original plan with regret if you couldn't accomplish everything that was on it. The important thing, as with most human relations, is time spent together.

Listen attentively to your loved one. Say "I love you" often. Bring shared adventures back to life through stories, photos and any other means available. Touch, hug, kiss, share meals and celebrate life while you can.

Your journey with your loved one will not follow a straight path. Life is not a movie. If you and your loved one shared those last years or months with deep communication, facing challenges and enjoying what you can, you will have successfully completed the journey that you began—together.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Minding Our Elders

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I think this article is wise and lovely. However, reading it I became sad about the situation surrounding me. 2 1/2 years ago my then 94 year old mother put herself in a nursing home after my father passed away at 98. They had been together for nearly 72 years and she fell apart. As close as they were; I realized how unprepared they were for the inevitable. Since going into the nursing home; my mother has declined. This was her decision as she was fully able to remain in an apt at the senior housing where they had lived for 25 years. At the time; she refused to discuss it and my only sibling would not talk about it either. It is so sad to see the situation that exists today; partly due to lack of conversation, discussion, mutual planning.

My sister 'hates me with a passion' for no reason that I have ever been given although I have begged for one. Again, nothing to work with; no conversation,
no discussion, no cooperation.

Beyond this; what I really struggle with is the refusal of my sister to allow the 3 of us;
my mother, she, and I to do anything at all together. This includes my mother's birthday, Mother's Day, etc. If I enter the room; she leaves. If I see ahead of time that she is there; I don't go in only to avoid the scenario and the pain of it.

I'm hoping others will respond to the following. My mother is constantly bringing up
my sister's name and saying such things as, " Rona always goes to the cemetery.
Rona does ------ and she does ----" Also, my nephews don't speak to me and my mother protects them also. I repeatedly tell her how painful this is for me but she just acts like I'm hurting her and continues. I'm constantly feeling such sadness,
frustration, pain and sometimes anger. A few months ago I reached the point where
I didn't contact my mother for 2 months because I couldn't take it anymore. Now she started again doing the same thing. I try to tell myself to ignore it all but I can't. I have done all I ever could for all of them. I am considered the competent one and therefore am supposed to take it all. I can't. And so now it's again the same situation. Since this last happened 3 days ago; she has not called me and I haven't called her. I'm always left feeling guilty and badly about it all. This is a very old pattern. Please help.
Thank you for any words of wisdom and experience; any support.
Hi Elaine,
I'm glad you shared how your family is treating you, as many of us on this wonderful caregiver's site can relate. You are not alone! I'm going through the same thing with my brother and his 'family'. My (only) nieces (one of which is my Godchild) has been 'brainwashed' not to have contact with me. I am in the middle between 'trying' to care for my mother... She doesn't want to get 'involved' and it has only put additional stress on her and me... As we speak, this stress has taken a big toll on me. (like you) I tried everything to make amends, but my sister-in-law wears the 'pants' in the family (she's 10 yrs younger than my brother, so my brother does whatever she wants... so she won't leave him)... The saddest and only thing I could do was to completely remove myself as far away from this toxic relationship, because it was effecting my health... and, my mother's. Keep writing here and know you have many of us that understand and care... Blessings... Lynn
Thank you, Lynn. I'm so sorry that others, as yourself, are going through such frustration and heartache. I apreciate your support. Blessings to you, too. Elaine