Those last few hours, days, weeks, or months are a mix or panic, sorrow, numbness, and tenderness.
It usually comes after an accident, diagnosis, or surgery–or sometimes, for our elderly, it follows a slow, painful descent.
However you got here, my heart goes out to you.
“I Don’t Know What I Should be Doing Right Now.”
This is normal. You feel lost, kicked in the gut–you have little or no experience at this.
I know your world feels as if it’s falling apart. You might feel the need to control everything, or you may feel that nothing is important. You may be going a mile a minute, making phone calls, demanding to see doctors, exploring treatment options–or you may be paralyzed and all you can do is sit next to your loved one and try not to cry.
Either way is fine. Your’re on auto-pilot. This is fight or flight. You wish you could just go back to life as before, but you can’t. You wish you could be a caregiver–as hard as it is, it sure beats feeling helpless.
Let others step in–or tell them everyone that everything can wait. Do what’s natural.
The Bare Essentials–A Few Important Things to Remember:
- Get a piece of paper and pen–write down anything the doctors or nurses tell you–you’ll be glad you did when someone asks you something and you have a complete mind meltdown
- Keep track of your loved one’s meds and treatment times–realize the care staff isn’t going to deliver the meds on the dot, but you have the right to ask–especially with pain meds (which can be done with IV) your loved one should be kept comfortable–and you can insist on this
- Designate a liason–a family member or friend who can field calls and coordinate plans–they’ll feel useful and you won’t feel overwhelmed
- Pace yourself. If you’re in a hospital or hospice or at home, know that you have to keep some strength and clarity in reserve–in case you need it
- Get your sleep–and get a bit of fresh air–you may be called on to make a very important decision–do you really want to do that on no sleep?
- If your loved one can talk, initiate a conversation about end of life care–feeding tubes, Do Not Resuscitate orders–if you have a living will, then you have it in writing–if you don’t, then as hard as this is, ask the nurse’s desk for one (the staff can get you one). It could save you so much heartache later
- If you do have a living will, bring it to the hospital or care center. Even if the facility has one, you need the other copy with you. Trust me, these things can slip through the cracks
- Be the family you are. Don’t let others judge how you’re reacting to this situation. If you’re not cuddly, then don’t do anything that doesn’t feel natural
- Know that you can’t control others actions–some people may rush to your side, others hang back. Let everyone “be” without worrying about them. Stay focused on you and your loved one
I’m Already Wracked With Guilt and Regret–We Should Have Caught This Sooner, I Should Have Done More…
These are normal feelings. It gives our brains something to do. We’re under the illusion that we control things, that if we had done this, not done that, that things would be different. Life is bigger than us mere mortals. Try not to stay in this awful, negative vortex.
You’re spinning your wheels and taking valuable time and thought –and love away from your your loved one and the time you have together. Stay Present.
I Can’t Think Straight–Shouldn’t I Be Making Plans?
Only if that brings you a measure of comfort. It will all work out. Let your liaison coordinate anything you’d like done now–flights, checking out care facilities, etc. This isn’t the time to get caught up in the doing–and if you are, do it because it’s your coping mechanism, not because you think you should.
When Do I Start Making Funeral Arrangements?
It’s different for everyone. Some people have family plots and know their local funeral director as a friend. Others are new to their area and haven’t a clue.
Are you the type to ask a doctor flat out how long does your loved one have left?
Do you want to know?
It’s okay not to, everyone’s copes differently. Also know that doctors are not infallible. They can be wrong. They can misjudge. Life is determined by the will–and the spirit. But if it would make you feel better to have a general time frame, then ask a doctor or nurse–ask if it’s time for hospice–enlist all the care you can get.
Hospice will be more wiling to talk about the death and dying process than doctors will (usually) -and palliative care (pain management). Some doctors resist hospice, but I find they’re a valuable resource to families. It doesn’t mean your loved one is going to die this second because you ask for hospice. It means you’ll have the support you need–people that have been through this.
Should My Loved One Stay in the Hospital, Go Into a Hospice Center or Should I Take Them Home?
Again, what’s right for you? And your loved one? Have you talked about this before? Have you ever thought about it? Is there care manageable at home? Will that be more stress on you–or less?
It may take you a while to figure out what feels right, and sometimes you figure out what’s right by what’s wrong–if the hospital is getting on your nerves and you just one everyone to go away and for it to be a time of peace, then you probably want a hospice center or to return home.
Does the care feel overwhelming to you? Would you rather go to a care center and let others take care of things? You can spend the night there, and most hospice centers are very thoughtful and serene.
Or does home sound like the only place you and your loved one wants to be. Home hospice is available as well, and pain can be managed from home.
You’ll figure this out along the way. Don’t feel pressured to make decisions prematurely or on someone else’s timeframe. Trust your gut.
For some, this is a deeply spiritual time, a time when faith is important. Even if you haven’t turned to your faith in years, if it feels right, then ask to see a chaplain, priest, or rabbi. Faith can oftentimes give you a measure of comfort and hope.
I’m Scared if I Stop Moving, I’ll Fall Apart
Is it so bad to fall apart? I know you think that if you do, you’ll never function again. You will.
If you truly can’t let yourself fall apart now, then set a date–in the future–and give yourself permission to fall apart then. Eventually, you’ll need to cry and scream, and beat something. You’ll need to curse, or sob, or fall to the ground. This is all a part of grief, and grief starts long before the last breath.
Losing a loved one is about the hardest thing you’ll ever do and the emotions that come with it are some of the hardest, strongest, saddest, awful-est time you’ll ever go through. But you will.
You will keep breathing. Your heart will keep beating, unfair as it is. You will.
But for today, be present.
If you have only days, weeks, or months left, then gather and treasure every sweet moment you have–
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir
Family Advisor at www.Caring.com
Syndicated Blog at www.OpentoHope.com
Kunati Publishers, www.kunati.com/mothering-mother-memoir-by-car/ - 95k
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