Grieving For a Parent with Dementia

Grief takes many forms.

A few weeks ago, I watched Julianne Moore’s Oscar winning performance in Still Alice with tears in my eyes. As I’ve shared before in this blog, my mother has Lewy Body dementia (LBD), a cruel combination of Alzheimer’s and Parkinson’s diseases.

Mom and I at the beach last summer before her symptoms began to worsen.

Mom and I at the beach last summer before her symptoms began to worsen.

Of course, all of these diseases are awful; however, although Alzheimer’s affects the mind and fine motor skills can be lost, it is more well known for causing mental losses. Parkinson’s affects the body, but people typically remain sharp as a tack. The twist with LBD is that it begins destroying a person both mentally and physically.

Recently, we watched Free Willy with my Mom and the grandkids. Of course, this is a cute movie that adults can enjoy; however, I’ve noticed that lately my mother prefers kid’s movies and old children’s TV shows like Full House.

She can hardly walk, but will practically run toward a piece of cake, relishing it with as much enthusiasm as a small child. My Mom now needs help getting dressed and showering. When she wants something, she wants it NOW. And sadly, she is losing some of her bodily functions.

In some ways, my Mom is like a kid, but in other ways she is clearly not, which makes things tricky. As a full-time caretaker, I have to constantly remind myself to treat her with the respect and dignity that she deserves.

We’ve always been extremely close, so at the same time, I am mourning the loss of the mother I knew and trying to accept and love the person she has become. We were best friends and I was dependent on her for advice and support; now I must adjust to her being totally dependent on me.

 Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Image courtesy of Stuart Miles at FreeDigitalPhotos.net

People with LBD have symptoms that swing wildly from day to day. She has her good days when she doesn’t shuffle as much, can hold her head a bit higher, and is more alert. Sometimes she’ll go days without any hallucinations. For a brief moment of denial, I can pretend she will get better.

In fact, this is a belief and statement my Mom often makes. “When I get better…” she says, which always gives me a pang of distress because I know it isn’t true.

And in my dreams, Mom is her former self, head lifted high, walking normally, standing straight, with no tremors, hallucinations, or confusion.

But then I am hit with reality.

One morning my Mom asked me if I was a Jehovah’s Witness like her. I said, yes, I’m your daughter, Julie, and you know that I am a Jehovah’s Witness. Oh yeah, she said and kind of giggled. A half hour later, she asked if I like sailing. I said, yes, you know I love sailing, I am your daughter, Julie. Oh yeah, I know that, she said. A few moments later she asked who my mother was. Trying to have a sense of humor, I said her name. She looked confused and I felt bad. You are my mother, Mom. I am your daughter, Julie.

She often starts sentences with, “My Julie….” and tells me about something I’ve done in the past as if explaining an incident to a stranger.

There are days when my Mom thinks a bear is in the laundry room, a tiger is swimming in the pool, or baby lions are squirming in the bottom of her bed.

She has lost her sense of balance and absolutely refuses to use a wheelchair and sometimes forgets to use her walker, so inevitably there are days when she falls. I must call my husband or brother to come home to help me because I am unable to lift her off the floor by myself.

Fortunately, these things don’t happen often right now, but they happen.

We try to laugh at these moments, but painfully, deep down in my soul, I know I have been given a glimpse into the future. That the day will arrive when she won’t recognize me and even though I explain who I am, she won’t understand like she does now.

As I said, grief takes many forms and it isn’t just for mourning someone who has died.

Of course, grief isn’t the only emotion I feel during these challenging years.

My feelings range wildly from a yearning for the mother I once knew and loved, to anger and frustration with the inevitable progress of this disease, to helplessness as I watch symptoms worsen with time, to guilt when I lose my patience, to fear that she will take a bad fall and truly hurt herself, to a deep and profound sadness.

I also grieve for the freedom I once knew. Although other family members give me regular breaks, I no longer can leave the house without calling a “babysitter” and often feel trapped. Fortunately, I can work from home, but writing takes concentration and the constant interruptions are frustrating to say the least.

Sometimes I feel downright resentful. Sometimes me and Mom bicker all day over stupid stuff.

Not pretty, but there it is.

These are all normal emotions and I know that I’m not alone. That’s why I like to write periodically about caregiving for all of you who are going through a similar situation.

Statistics show that nearly 10 million adult children, ages 50 and older, are caring for aging parents. So if you are in my shoes, what can you do? How can you retain your joy – and sanity – during one of the most challenging times in your life?

There are some great tips on the The Alzheimer’s Society’s website to hopefully help all of you who are caring for a parent or someone suffering with dementia. Here are a couple of their tips along with a few from a previous blog I wrote:

  • Don’t bottle up your emotions. Express your feelings to someone who will listen and empathize with you to provide a release. That person could be a spouse, good friend, family member, professional, spiritual adviser or a support group. If you are a spiritual person, prayer is invaluable.
  • Take care of yourself physically and emotionally. Get enough sleep, eat healthy, exercise. If you become exhausted, you’re more likely to get sick yourself and lose your ability to be an efficient and effective caretaker.
  • As I’ve learned the hard way, watch for warning signs such as mounting frustration and out of control emotions. This may be difficult, but that means you MUST schedule time for relaxation. By doing so, you’ll be in better condition, both emotionally and physically, to take care of your loved one. Nurturing your own body and spirit gives you the strength and endurance to continue.
  • Try to make time for yourself each day. Boomers are often juggling caregiving with demanding jobs and caring for their own families. Do not sacrifice your sanity for the sake of caregiving. Delegate, ask family members or friends for help, or consider hiring professional help.
  • Try to focus on the positive. Enjoy things that you and the person with dementia can still do together or talk about interests you still share. Remember, if caregiving is hard, it is also a labor of love. It is a chance to connect with a parent and pay them back for all those sleepless nights you cried incessantly and inconsolably and they comforted you.

Along my journey, I am trying to put all these tips into practice.

If you are in a similar situation, I’d encourage you to acknowledge all of your feelings – good and bad. Try writing and releasing your feelings like I just did in this blog.

Lean hard on God, family, and friends. Ask for help as needed. Focus on the positive things in your life and appreciate the small moments of joy you have each day. And as suggested in the above tips, be sure and take care of yourself spiritually, physically, and mentally.

For more information on caring for a parent with dementia, see my three part series: Caring for Parents with Alzheimer’s or Dementia, Part One, Part Two, and Part Three.

 

 

13 thoughts on “Grieving For a Parent with Dementia

  1. Pearl R. Meaker

    I pray that God will continue to strengthen you. You are doing a loving, caring job.

    I also applaud you for being so open and honest. “Sometimes I feel downright resentful. Sometimes me and Mom bicker all day over stupid stuff. Not pretty, but there it is.”

    All too often, people won’t admit to those feelings, but they are normal, honest feelings. This is a very difficult thing to go through.

    I didn’t have to be a caretaker for my Mom, who passed away with Alzheimer’s. But, she would call me and not be quite sure who she had called – was I really her daughter. She would call and yell at me for not talking to her, saying I hadn’t talked to her in weeks – when the truth was we had talked a mere 15mins. before. She would call over and over in the same night. I assigned her her own ring on my phone – so if I’d had enough for one night I knew not to answer even if I didn’t have my phone right with me. (I couldn’t shut it off ’cause my hubby worked on the road and I didn’t want to miss his calls.)

    My brother eventually got daily care helpers because he had to go to work and she couldn’t be alone all day. Eventually, she went into assisted living and passed away shortly before she would have had to be moved to a full nursing home.

    It is a hard, hard thing to have to go through, but by the sounds of it, you’re doing a good job

    Hugs and prayers,
    Pearl

    Reply
    1. juliegorges Post author

      Thanks for your hugs and prayers, Pearl, always SO much appreciated! Also thanks for sharing your experience with your Mom who had Alzheimer’s. I related to her thinking you hadn’t talked in weeks when it had just been 15 minutes. That is another symptom of dementia – my Mom also has no concept of time. There will probably come a time when we will need some professional help as well. You are right, this is a very difficult thing to go through, so in the meantime, I’m taking a day at a time as the Bible so wisely recommends.

      Reply
  2. Jeanne

    Such a difficult time for you and one filled with so many emotions, I’m sure. I hope that you continue to express yourself and that you reach out for help when you need it. You are doing an amazing thing and you will look back and cherish this time with you mom someday even though she has changed. All the best to you. Thanks for sharing.

    Reply
    1. juliegorges Post author

      Thanks, Jeanne for your wise and kind thoughts. So true. In a previous blog, Caring for Aging Parents, I wrote that if caregiving is hard, it is also a labor of love. It is a chance to connect with a parent and pay them back for all those sleepless nights you cried incessantly and inconsolably and they comforted you. As I am discovering, caring for a parent is a life-changing experience and one that is often as rewarding and inspiring as it is painful.

      Reply
  3. Marquita Herald

    Thank you for sharing your story Julie, as others have said here my best wishes and prayers are with you and your family. I believe it’s very difficult for most people to fully understand how challenging your situation can be unless they experience it themselves. My neighbor and the owner of the house I rent has a sister who suffers from dementia. I have known them a long time so I knew her before the symptoms progressed, but I still didn’t fully “get” it until they asked if I could help out for 2 months by caring for her sister for 3 hours each morning. I didn’t feel I could say no so I gave it a shot. To say it was an eye-opener would be a gross understatement. By that time the dementia had progressed to the point she didn’t recognize me so each day it was like meeting her all over again. Anyway, I won’t go into details other than to say that the experience gave me a whole new level of appreciation and empathy for anyone living with these circumstances.

    Reply
  4. Marilou George

    I found your great blog through the WLC Blog Follows on the World Literary Cafe! Great to connect!

    Please check my blogs confessionsofreader.blogspot.com kidsbooktent.blogspot.com

    Thanks

    Reply
  5. Pingback: How Problems Can Lead to Happiness | Baby Boomer Bliss

  6. sherill

    Hi, Thanks for sharing your story, I just want to say that you have a very good heart. My prayers goes to you and your family. thanks so much.

    Reply

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