Caring for a Dying Parent – What I Wish Someone Had Told Me
My mother used to tell me that there were only two guarantees in life – death and taxes. And yet, in spite of the fact that everyone eventually dies, I was surprisingly unprepared for caring for a dying parent – specifically, my mom.
My parents lived near me, so I went home every weekend to spend time with mom and give my dad a break, and I was with her for every hospital stay and her time in hospice.
In addition, I was one of the first of my friends to lose a parent from a long-term illness, so I had no experience with the subject and no one to ask for advice.
The Important Aspects of Caring for a Dying Parent
In this article, we will cover the practical and emotional aspects of taking care of a dying parent that I wish someone had told me beforehand including:
The practical aspects of caring for a dying parent:
- Hospice options: In home vs inpatient
- The necessary paperwork
- Funeral and burial planning
- Intermittent FMLA
The emotional aspects of caring for a dying parent:
- What to expect
- Making final memories and conversations
- Everyone deals with things differently
- Self-care and asking for help
The Best Advice I Received on Caring for a Dying Parent
Before I tell you what I wish someone had told me, I will tell you what someone did tell me that I am forever thankful for.
While my mom was dying, I was fortunate to have many supportive friends. One day a coworker took me to lunch to see how I was doing. After sharing with him how hard the situation was, he said something that surprised me, “Yeah, but don’t you think this is an honor?”
I was stunned, and he continued. “I guess I just figure that my parents took care of me when I was young, and I will take care of them when they are old. And it is an honor to be able to do so. I wouldn’t want it any other way.”
An Honor to Care for My Mom
In that moment he re-framed my thinking from feeling bad for myself, to feeling proud. Now, I was able to take care of the woman who once took care of me. It was still incredibly difficult, but it was an honor.
Then, later when my mom was feeling discouraged, embarrassed, and guilty for how her illness was affecting the rest of us, I told her that she had taken care of me and it was an honor to take care of her – I didn’t want to be any place else. I could see the weight lifted off her shoulders as her eyes filled up with tears. Those were the hardest months of my life, but I’m so thankful that I could be there for her.
Now, let’s get started with the practical.
The Practical Aspects of Caring for a Dying Parent
First, let’s look at the practical aspects of taking care of a dying parent including hospice options, paperwork, funeral and burial planning and FMLA.
Medicare Part A covers hospice care. It’s important to note that hospice care typically does not include room and board for full time care. You can learn more about what hospice is covered here.
So, unless your parent is already in a nursing facility and plans to stay there, you’ll have to make a decision about if you want to do in home or in patient hospice care. There are upsides and downsides to both options, and you’ll need to consider:
- The financial implications
- How equipped your family is to do the care-giving
- What your parent’s wishes are.
Most hospice care is provided in home. This is the option that my mother chose so that everyone would be able to visit her as much as they wanted.
The in-patient facility that she toured had small rooms that only accommodated a few visitors at a time, and she had a very large family. My family was relieved when she made this decision because we wanted to be around her all the time, which was easier to do with her at home.
If one of your parents is still well, and able to help with the caregiving, and your parents want to stay together as long as possible, this may be a good option. If you or a sibling have a home that can accommodate your parent’s needs and are up for the commitment, then this option might make sense as well.
Hospice Coordination for In Home Care:
When hospice started, a hospice coordinator came over to get us set up, and a hospital bed was delivered to my parents’ house. The hospice coordinator shared with us all the services and support that they provided, but it didn’t really sink in that my family was still going to have to do most of the work.
The hospice nurse would visit once a day to check in. She was always on call if we needed anything, but we were responsible for most of the hands-on care – such as keeping Mom comfortable, giving her ice chips, administering the pain medication, etc. It wasn’t easy.
Caregiving is stressful and does take a toll on the caregiver. Medicare Part A does cover occasional in-patient respite hospice care so that caregivers may take a break.
If you are unable to afford inpatient hospice care but feel you need more help than just respite services, you could also consider hiring an in-home health aide to assist you. This is also an option if you must work during the day and need someone at home with your parent; or if your parent is not living with you but is not able to fully take care of him or herself.
If you or your parent is financially able to pay for inpatient hospice care, or they have private insurance that will cover in patient hospice care, then this may be a good option to consider. Medical professionals will handle the difficult aspects of care-giving. You will know your loved one is in good hands and will not have the stress of providing that care.
However, there are some drawbacks as well.
- First, while hospice homes are typically designed to feel calming and like a home, you are not at home. You may spend a significant amount of time away from your home, making it difficult to keep up with the day to day responsibilities of normal living.
- Next, rooms typically don’t hold many guests, so you will have to take turns visiting your parent. For larger families, this may mean everyone is spending most of their time in a commons area down the hall from your loved one.
- Finally, Your parent will also be away from their home, which may be less comforting to them. If he or she is married, then it may mean periods of separation from a spouse, which may be difficult for both of them.
The Necessary Paperwork of Caring for a Dying Parent
Next, you’ll want to make sure that your parent has the appropriate paperwork on file including a Will, a Medical Power of Attorney, a Financial Power of Attorney, and a Living Will or Do Not Resuscitate Order.
- Will: This determines what happens to your parent’s assets after they pass. Legal requirements vary by state, and it is important to meet these requirements or the will may not be legally enforceable. Many people, especially those with a lot of assets or complicated situations, will see an attorney to create a will. However, websites such as LegalZoom, Willing.com, RocketLawyer.com and many others can help someone create a will online that complies with state laws and will give instructions on how to sign it (often requires witnesses and or a public notary).
- Power of Attorney (Medical and Financial): This will give the person your parent chooses the legal power to make decisions on his or her behalf. You can learn more about that here.
- Living Will or Do Not Resuscitate Order: This will dictate the type of care your loved one will receive when he or she is no longer able to make that decision. An attorney or legal website can create that document. When hospice care begins, the hospice coordinator may help your parent set up a Do Not Resuscitate Order.
Funeral and Burial Planning
My family was fortunate that my mom prepared as much as she could to take the burden off her family. Not everyone has these conversations beforehand. Moreover, in the midst of the heightened emotions of grieving, planning a funeral and choosing a grave-site can be overwhelming. In addition, it can also lead to conflict within your family.
What to Ask Your Parent
If your parent is still coherent and willing to talk about it, get their input on as much as you can.
- Do they want to be buried or cremated?
- What kind of funeral service would they like?
- Do they want any specific songs played or passages read?
- Do they want a wake where stories are shared?
- Where would they like to be buried or have their ashes stored?
Even in a close family, people will have different opinions on what mom or dad would have wanted. However, if mom or dad gives input ahead of time, then that’s one less thing to worry or argue about. I’m forever thankful that my mom planned all that she did, including planning her entire funeral service, even though it was difficult.
A Funny Moment
Perhaps the oddest moment of this process was the day that I accompanied my parents to pick out grave-sites. Mom wanted to be buried at the prettiest but most expensive cemetery in town, and my dad is rather frugal. They weren’t making any progress on the decision, so Mom asked me to join them to tour the various options.
The situation resolved itself when we went to the place she liked, and Dad found out that they were having a “buy one get one half off” sale that day. I was a little disturbed (aren’t BOGO sales supposed to be for shoes and jeans?), but Mom and Dad were very happy with the beautiful plots they picked out, and the money they saved.
Now, years later people still find comfort visiting mom’s grave under the tree she picked out. It’s not too far from the water spigot, so they can fill up the vase when they put flowers in – she always was practical. It was hard, and at times uncomfortable, talking about these things with her; but it was very much worth it. And we created some good memories along the way.
FMLA & Your Job
Now, let’s talk about you. If you are still working, figuring out how to balance your job and taking care of your parent isn’t always easy. However, FMLA (the Family and Medical Leave Act) does offer protection for those taking care of sick parents as long as you and your employer meet certain criteria.
You can also take intermittent FMLA instead of continuous FMLA, which will allow you to take time off in staggered periods or take off some time each week. You can apply for intermittent FMLA and then take it when you need it.
At the point that you realize your parent is dying and you are going to need to help take care of them, I recommend that you go ahead and complete the paperwork. When you find yourself having to unexpectedly miss work, you won’t have the added stress of having to make arrangements with your employer. You can learn more here.
The Emotional Aspects of Caring for a Dying Parent
So now that we’ve covered some of the practical aspects of caring for a dying parent, let’s move on to the equally important emotional aspect. This includes what to expect, making final memories and conversations, how to deal and self-care.
What to Expect
I hadn’t really been around a dying person until my mom was on hospice. I was shocked to learn about the “active dying” process in which the body has to actively shut itself down. This phase usually lasts a few days and involves skin color changing, breathing changing, no longer eating or drinking, and the patient becoming semi-comatose.
Hospice Will Help
The hospice nurse let us know when she thought it had started. In addition, she told us what to expect in the final few days and gave a pretty accurate estimate of how much time we had left with her. It was helpful to have the hospice nurse available on call. She even came to the house at 2 am, in the middle of a thunderstorm, when we needed her.
You might have hospice duties you will need to preform when taking care of your dying parent. We were fortunate to have two nurses in my family who were often there; but in between, I oversaw administering the pain medication. It was very stressful. I kept a notebook to write down the times that I gave her the various medicines and had the schedule memorized, even in my sleep.
There were difficult things we had to do to take care of her, like helping re-position her in the bed which clearly caused her pain. The hospice nurses are there to support the caregivers, so reach out to them with questions or to ask for advice or help, even if it’s in the middle of the night.
Making Final Memories and Conversations
With death, there are no do-overs, and I tried to keep this in mind as we went through those difficult last days.
If you are still early enough in the process that your parent is feeling well, you may be able to plan some fun experiences. Perhaps you can take your parent to a place that is special to him or her, or go for walks in the park, or go out for ice cream, etc.
As much as you are able and want to, take advantage of those opportunities. Remember, after he or she passes, all the normal tasks and demands of life that keep you busy will still be there waiting for you. Unfortunately, your parent will not.
This is also an opportunity for you to be intentional about your conversations. It’s a chance to reflect on the good times you have shared together, ask for advice or wisdom, clear up misunderstands, apologize, forgive, share what you love or appreciate about your parent, etc.
- I have some friends who have preserved these conversations in their journals or audio recorded them.
- You could also write a letter to your parent and read it to them if you find it difficult to come up with the words on the spot.
The final days seemed to drag on forever as people came and went and we sat around the house waiting for the inevitable. I thought this felt really awkward – all of us sitting around just watching Mom while she was on her journey to leave this world.
The nurse had told me that she could probably still hear us, and so I started talking – telling her who was there, what people were doing, funny things that had happened, random thoughts. It made me feel better having that last connection with my mom, and I think it probably helped her too, hearing my voice and knowing what was going on.
Everyone Deals with Things Differently
A friend once told me that in grief, everything is normal. And when caring for someone with a terminal illness, grieving starts prior to the actual death.
It was surprising to see how people dealt with losing someone they loved. There were some who were normally the pillar of strength in difficult circumstances that I noticed were avoiding the situation as much as possible. There were others who were surprisingly comfortable with death and seemed to know just what to do to help.
For example, I tended to focus on tasks and keeping things going. Another family member was comfortable to just sit. Another withdrew and wanted to be alone. Each person responded uniquely to the situation.
Because people are different and everyone is feeling very raw emotions, it is easy to accidentally hurt those you care about. Do your best to accept that each person has their own unique way of grieving. Try to not be offended when you don’t understand them or they don’t understand you.
In addition, try to be honest when you are struggling and apologize when you accidentally hurt someone. Give others the benefit of the doubt as much as you can.
Self-Care and Asking for Help
Taking care of a dying parent is difficult. Not only are there the physical demands of care-giving, but you are dealing with your own emotions as you are beginning to grieve the impending loss of your mom or dad. Additionally, you likely must still manage the demands of your normal life.
You may feel conflicting emotions – such as wanting to be there for every moment but also being utterly exhausted and just wanting to sleep for days.
It’s important to remember that you are not alone.
If you have a friend who has already lost a parent, he or she may be a good source of support as they will understand what you are going through. And even if you don’t, others will want to be there for you as well. Other sources of support could include coworkers, in law’s, members of the faith community you are in, as well as the nurses or hospice workers.
A word of caution:
You may have some friends that pull back at this time. Death is an uncomfortable reality that many choose to avoid thinking about until they absolutely must. Others just struggle with knowing what to say.
I remember when my mom passed away, one friend never reached out me, much to my surprise. Months later she came to visit and tearfully apologized, saying that she had felt so bad for what I was going through but didn’t know what to say, so she just avoided me altogether. It hurt, but I understood after she apologized, and the friendship was still worth keeping.
How to Find Help
If your situation is hectic with things happening quickly, you may not know what you need. It could feel like you are in survival mode, just trying to keep up. But as you find tasks that are causing undue stress, be sure to reach out for help, whether in person; or, for less personal requests, through social media, including sites like CaringBridge.
Maybe you need someone to run an errand you can’t complete, or help transport a child while you are with your parent, or sit with your parent while you handle something. Or maybe you just need help with meals or mowing the lawn. Ask for help when you need it. And if you can afford it, now is a good time to consider outsourcing tasks you don’t need to complete yourself – such as grocery delivery, yard maintenance, or a housecleaning service.
Self-Care is Important
Remember to take care of yourself as well as your parent. Get rest. Take a break from the situation. Get together with a friend. In order to be a good caregiver, you need to also take care of yourself. As the flight attendants always say, you should put on your own oxygen mask before assisting someone else. You can’t take care of your parent well if you are completely burned out.
Taking care of a dying parent is difficult, but it is also an honor and a chance to make wonderful last memories. By thinking through the practical and emotional aspects of the situation, you can make those final days go as smoothly as possible and allow yourself to make the most of those final days together.
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