I’m Not Sure I Want to Attend a Caregiver’s Support Group

Creating Memorial Services with Heart, Part of the Caregiving Journey

Creating a meaningful memorial service for your loved one is cathartic, and you don’t have to wait until your loved one passes to begin to think about what they–and you–want and need.

It’s a part of caregiving you’d rather not thnk about, but it’s the last thing you can do to honor their wishes and gather everyone around to reminisce, consol each other, and share precious memories.

Planning funerals and/or memorial services takes time, and you’d rather spend those last few weeks and days your loved one has on earth at their side.

You may find that planning your loved one’s memorial service feels good in a way. It’s proacive. It’s exercising a little bit of control, and it feels good to honor the one you love. Don’t feel like you’re giving into death, and only do as much or as little as feels right to you.

Have you and your loved one talked about cremation or burial?

Even if you choose cremation, there are options. For some families, talking about this, even with the loved one who is dying is somehow relieving. It feels good (in a strange way) to make one last decision together.

Here are some tips to help you create a meaningful service:

If you choose to scatter your loved one’s ashes at sea, from an airplane or other location, then make a few calls. Depending on where you live, you may have to wait for this portion until later. There are also laws regarding this practice, and there are companies (charter boats, etc.) who can assist you with this.

One of the most beautiful services I’ve ever attended was on a sailboat with just a handful of loved ones. Someone played the guitar and his wife scattered his ashes behind the boat at sunset and his sister broke rose  petals on the water at the same time. It was truly touching.

• Decide if this is a somber/grieving occasion. It’s okay either way. Sometimes it’s just heartbreaking–our loved ones suffer before they pass, or it’s way too soon. It’s perfectly okay to gather to cry, hug, and hold each other.
• You can have a funeral type service soon after they die, and a memorial service months or even a year later–after the initial hurt and shock has worn off.
• For others, this is a sweet, playful time. Make it your own and reflective of your relationship. Hire an Irish band, do whatever is right for you.
• Know that you can’t please others. Don’t get caught up in this vortex. Don’t even listen to the snide comments–and trust me, there will be some. Your family and friends will just have to understand. Let them talk, if they must. This is one time when you need to follow your heart.
• Ask someone who needs a job to do to contact out of town relatives and friends and let them know that your loved one may be passing soon.
• If you do decide on more of a memorial/celebration type gathering, then let people know. Some families prefer people to wear colorful clothing, that joyful music will be played and people are encouraged to share humorous stories. It’s helpful to let people know this so that they respond properly.
• If you’d like to forego flowers, then begin to think of charities that people can donate to–but do some research and offer website or address info that can be placed on the program or sent by email.

There are no rules. Create a memorial service with heart. There’s nothing more healing than to celebrate your loved one, your life together, and all that they mean to you.

~Carol O’Dell, Author, Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

www.mothering-mother.com

• E-vites to the service is totally acceptable and a great way to contact people without trying to make a zillion calls. Again, a great job for someone who wants to help.
• Be aware that you may have a “dry run.” By that I mean that your loved one could rally around again. Don’t be surprised if this happens. After you let everyone know, get all sad, start to make arrangements–and then they seem to get better. (My mom did this and I felt kind of foolish). This is common, and in general don’t expect them to miraciously get better. This is often temporary, but of course no one can know for sure. All the work and prep you did can be put on hold and if you’re fortunate enough to have a few more days, hours, weeks, or months with your loved one–then of course, it’s a good thing.
• Many families and cultures have a dinner of sorts after the service. For some families, they like to get creative–I heard of one in Atlanta catered by the famous Varsity restaurant. The lady passing already planned and paid for it–and it was such a send off for her loved ones, and such a relief. Most people do something in someone’s home–a potluck. The point is, you get to choose–do anything you want. Cater it, serve deli sandwiches, serve filet mignon–doesn’t matter, just do what fits you and the occasion.
• Another special touch is to give attendees momentos–I heard of one funeral in which everyone received a baseball cap from the collection of hat’s the father left. What a better use of a collection that to share it with those he loved!
• Be aware that funeral/memorial services are people’s business, but it’s your time of grief. If you have a budget, then let them know up front that you have a maximum you will spend. Don’t get suckered in by allowing someone to use your emotions. While you want to make this special, you don’t want to pay for it for years to come.

Let people help, but don’t let them take over. You have the ace card, and if you need to be firm or difficult, you’ll be forgiven. You can’t possibly do all this alone. You’re going to have to let go of some of your perfectionist tendencies (and we all have them), and let others pitch in to make this day special.

State clearly what you and your loved one want, but then let others deal with the details. Creating a funeral or memorial service with meaning takes thought–and heart–and it’s part of the healing process of the caregiving journey.

Alzheimer’s and Violence, “I Don’t Want Anyone to Know How Bad It Is”

Have you stopped having people come into your home because you don’t want them to see your dad/husband or wife “that way?” Are you hiding awful it really is?

Alzheimer’s, Lewy Body, dementia and other neurological based diseases affect the brain in different ways. Some individuals become docile, too docile. They stop talking, and pretty much stop moving. For others, Alzheimer’s turns them into a fidget machine. They pace incessantly, talk, babble, rant, need next to no sleep, and when forced to sit, their knee jiggles non-stop. Others are paranoid and will lash out at anyone who tries to touch them–it’s as if their brain–and body–is on fire.

And for some, Alzheimer’s makes them anxious, mean, and violent. There’s no other way to  put it.

According to a recent study conducted by the Journal of the American Medical Association s of resident-to-resident violence in Massachusetts nursing homes and dementia special-care units, researchers found that about 25 percent of the dementia population in a care facility had violent tendencies.

More and more law suits are cropping up because staff and patients are being attacked, and resulting in physical injuries such as fractures, dislocations, and lacerations.

They curse when before the disease they were  practically saints. They use vile language that would shock and embarrass a sailor, and their eyes look as if they could kill you in your sleep. For many, their violence is more of a protective mechanism.  They may thrash, hit, try to bite if they feel cornered, yell, cry. It’s more exhausting and embarrassing than harmful. They act like really big two year old.

In all of these cases, Alzeimer’s effects each brain differently. You  have to think of it as a chemical reaction, not a persoanl decision.

And then, there are the truly violent . Their rage is unpredictable and unprovoked. They slap, bite, kick, pinch, and for a few, and surprisingly, they possess the power to break bones, knock someone down, and are truly dangerous.Many are placed in care facilities because their families can’t handle it. Their families don’t visit as often because they’re scared. They feel as if their loved one is dead to them, and yet they struggle with guilt every single day. It’s an awful existance for everyone involved.

It’s that interum time that I’m addressing–when you’re starting to notice some anger–gritting teeth, cursing, grabbing your wrist really hard, knowing you against the wall–and you don’t know how far this will go. You make excuses. You provoked it. You shouldn’t have confronted them. They’re not taking their meds. It only happened once…these are just a few excuses we create to “protect” our loved one.

I urge you to speak to your doctor now.

For some, an added medication that stabalizes their mood (and yes, it may make them lethargic) can curtail their violence. It doesn’t work with everyone, but if you catch it early, it just might work.

For many, particularly spouses, you hide these changes in behavior  from your children, your neighbors, your friends.

You stop having people over. You wear long sleeves to cover bruises.

You’re afraid all the time. More afraid they’ll take your husband or wife away than that you’ll be hurt.

You can handle it–is your rationalization–but the guilt, the shame, the thought of being separated is what keeps you silent.

You grieve the death of your marriage, of the life you had–and yet, you can tell no one what you’re going through.

You don’t want anyone to “see” your husband, your wife this way. You want to preserve their dignity.

I understand. I did this with (or for)  my mom. I shielded her from the world. I didn’t let people know how chaotic, out of control, scary and heartbreaking it really was. I let her dig her fingernails into my arm and scream at me, her eyes so wild I didn’t even recognize my mother any more. If I would do this for my mother, I can truly understand how a husband or wife would be wiling to do even more.

But here’s what I came to realize:

This is a disease. No one will judge you or your spouse–and if they do, they just don’t  understand what’s happening. 

Your loved one can not  help this. This isn’t their “inner self” or what they’ve been thinking all along. You didn’t contribute to this either. It just is.

It really is nobody’s business and you don’t have to share it with everyone, but having at least one confidence, one dear friend or your clergy can help lighten your heart.

You know those statistics about caregiver stress and how many caregivers die before their loved one? They’re talking about you!

You’ fall into that category big time. All this stress could lead to depression, heart disease, obesity, and strokes–and you know your loved one wouldn’t want this for you.

You are not alone.

Sometimes, you just can’t do it anymore. You feel that you’re in a living hell.

This is a truly dangerous state and you have to ask for help.

With guidance, you can find a good care facility that has a low patient to care staff ratio and administers the proper medications needed to lessen the violent outbursts. I know you don’t want to “dope” your loved one. But you can’t continue to be hurt, or risk that for others.

This disease can get really ugly, and if you’re in this situation, I am so, so sorry–but please, don’t suffer alone.

That’s not love, and your loved one wouldn’t want this for you.

Screw what your family would think, what they neighbors will think. Protect yourself and know that asking for help is the right thing to do.

I can’t promise you that you and your spouse can stay together–in the house. I can’t promise you that this is going to all magically get better.

Sometimes we really do have to grieve and let go–knowing that you’ll never get back what you had.

But I promise that while it’s going to be hard–and lonely—and you’ll probably feel guilty–after a time, things will get better.

Your loved one’s care might be better managed with help. And although your life won’t be the same, it can be good. A new good. A different good.

If you’re experiencing Alzheimer’s, Lewy Body or dementia related behavioral changes (violence or otherwise), please consider calling the Alzheimer’s Association National Hot line. It’s confidential and you can speak to someone who really cares. The number is: tel: 1.800.272.3900

~Carol O’Dell, author of Mothering Mother

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