Statistics show that people spend about 4.5 years caregiving.

The average person with Alzheimer’s lives 5-8 years. That means there’s some time they might not be receiving care–the early years before they’ve been diagnosed when they’re able to cover it up, make excuses, or their family members are just  too inundated with work and children to even notice.

But once you start caregiving, there are four major cycles. Think of a pie cut in fourths.

Something has happened. Mom or Dad (or your spouse, sibling, or even child) has had a debilitating accident, a heart attack or the onset of another illness. Perhaps a bout with cancer. They need you and perhaps for the first time, you realize you may not always have them in your life.

The first slice of the caregiving pie is when you’re just the watchful eye in your loved one’s life. They may still  be living at home, or they may plan to return home after things get a little easier. After the hospital or rehabilitation stay, or initial diagnosis, you find yourself calling them more often, spending your nights or weekends with your loved one. They might even choose to downgrade at this point–move in with you or into an apartment, or into a gradated living situation (they can trade in their home or apartment for assisted living when the time comes). You might do some chores for them or accompany them to the doctor so you can see what’s going on. On the whole, your life continues on (after the big bump in the road) with just a few more calls or visits added to the norm.

This stage can last for months or even years depending on your loved one’s age and the progression of the disease.

Emotionally, it’s the first time you’ve realized your relationship and responsibilities have changed. You feel a twinge at the thought that your loved one won’t always be in your life. You begin to value the time you have together, and although you worry a bit about the future, you don’t do a whole lot about it–in part, because of denial–it’s just not that bad yet and without saying it, you need things to go on status quo. Soon, I’ll check into care facilities, soon, I’ll sit down with their doctor and have a serious talk about the progression of this illness, soon, I’ll gather community resource information…

Complications. Perhaps another heart attack, more than the occasional forgetfulness, or another diagnosis–now your mom or dad (or spouse or sibling) has two major issues.

You’ve entered the second and third quadrant of your caregiving cycle. One melds into the other as your role as a caregiver increases. You go from spending half your time to most of your time caring for your loved one. They maybe wheelchair or walker bound. If they have Alzheimer’s or other neurological disorders, they may not remember you anymore. You’re questioning if you can still work or if your loved one needs full-time care. Maybe you’ve hire home health care during the day and you cover the nights. You might spend weekends at their house or you?may need to go ahead and move them into an assisted living facility.

Emotionally, you now consider yourself a caregiver and no longer just a son or daughter or spouse. You’re doing things regularly that a normal, healthy person would do themselves and that makes you a caregiver . This might include financial or medical management, clothes and body care, wound care or injections for diabetes. You’ve learned a lot, and whether you wanted to or not, you’ve had a crash course in caregiving. You might not know all the community resources, but you’ve pieced together a few. You’d like to know more–more about Medicare, more about what their insurance will and won’t cover, more about the disease–but who’s got time? You’re juggling your own marriage, kids, and life. You’ve felt a real strain on sleep and relaxation, and it’s even hard to relax any more. You may have already cut your hours back at work, or quit–and if not, you know the day is coming. You think about the future–too much.

This stage can last weeks or years–and it is insidious and draining, but you know your loved one needs you, so you just have to limp by.

It might be like a slow drip or another traumatic event, but caregiving has taken over your life. You’re now a full-time caregiver. This doesn’t mean that you don’t still work–maybe you have to, but all your time, energy and thoughts are consumed with the needs of your loved one.

The fourth quadrant of caregiving is the most difficult. Your life as you once knew it over, and it’s been over. You’re consumed and numb and most days, you just wish it were over. You ache for your loved one who is now incapacitated. You do pretty much everything for them. They are either bed bound, wheelchair bound, or bound in their mind no longer connected to reality. Your days and nights are spent either giving or managing care. Your health and relationships are suffering, and you know that there’s no turning back–their illness or debiitation has increased to the point of no return. Still, you love them, find moments here and there that are sweet, but the exhaustion and frustration is bone-deep.

At this point, your loved one either enters hospice or if you have not done so already, they enter a care facility that may also include a memory disorder unit.

Emotionally, you admit defeat. You’ve done all that you can. Guilt and regret are plenty, but you now surrender. You can’t or won’t do it any more. You have a difficult time talking to anyone about this. You feel like a horrible person, but you want your life back. You want and need it to be over.

Surprisngly, your loved one may live weeks, months, or years.

***

I would love to give you a different outcome. If your loved one is young or suffered from an accident, they may be able to rebound. For the extreme aged, or for “life limiting diseases,” your loved one will not come back to you–not like they were. This sounds bleak. After the months or years you’ve spent caregiving, and this is the end?

Yes. But not all is in vain. Good has come from this, and while yes, you’d do some things differently, you’ve learned a lot. I know you can’t feel it now. You can’t feel anything. Quit. Stop. Either get hospice or get them into a facility. You need to stop. You’re a good, loving daughter, son, wife, husband. I know you don’t feel like it and if anyone knew what you’ve been thinking…

I know, and I’m telling you, you’re still good.

It’ll take a long time to recover, but you will. Your loved one will pass away, eventually. Make peace with that–with who they are, who you are, and with your journey. Rest. Let go. Yes, keep a vigilant watch as others take your stead, but it’s time to sleep better, eat better, and rebuild your life.

For those whose loved one’s live on, the caregiving cycle repeats in a way. You’re more of an observer as your loved one continues on in a care facility or on through hospice. You simply can’t do it again. Not in the same way.

My mother took that last turn and I called (and insisted on hospice). I chose against a feeding tube as she forgot to eat and swallow. Hospice came in March and she passed in June. You will have to find your own way, your own peace. Go deep in your own heart. Talk to a chaplain or someone you consider wise. I know that each person must follow their own heart, but I do implore you–at some point, you will have to let go.

It took several years after my mom’s passing to come to a place of deep peace. Some days, I felt as if i had killed my own mom, and if it weren’t for hospice reassuring me that I was continuing to show my mother love, I would have crumbled. For those in pain, there’s palliative care, which is such a blessing when needed.

I don’t write all this to depress you. I wish I had seen the bigger picture. I wrote Mothering Mother so that others wouldnt’ have to go it alone.

~Carol D. O’Dell

Author of Motheirng Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www..mothering-mother.com