Tuesday, September 17, 2013

the invisible victim

My best friend - whom I've known since childhood - is facing a very difficult time in life.


Her loved one was recently diagnosed with Alzheimer's and each day is increasingly more challenging than the last.  While I thought taking care of premature newborn triplets was the most physically, emotionally and mentally exhausting experience possible - serving as the primary caretaker to someone with Alzheimer's is definitely in the same rapidly soul-depleting ballpark.


The all-consuming level of effort required to care for someone with this grueling disease is intense. My sweet friend cannot leave her husband alone for more than an hour at a time.  If she does, she runs the risk that he will venture out looking for her and get either hurt, or lost, or both.  On those rare instances she does go out, she leaves him notes about where she is - and what she's doing - and when she'll be back. But sadly, her brilliant man - who can still rattle off facts and figures from year's past - doesn't understand. He insists that he doesn't need a babysitter - and is offended whenever his wife calls for people to come stay with him, while she runs errands.


She usually cannot take him with her, either, because he gets confused and uneasy. He also gets tired and frequently needs to lay down and rest. And during the evening, when my friend should lay down and try to get some much needed rest herself, her husband will be up several times throughout the night - often for the entire night - asking her questions about where he placed his car keys, or wallet, and where is he and how long will he be here?  Is he going to be late for school?

Where are his parents?


My friend adores her husband and she tries so hard to be patient and kind.  But his questions continue and continue, throughout the night and in to the next day and all through the next day and in to the next and there is absolutely no reprieve for as far as she can see.  It's not surprising, then, that she feels herself getting frustrated and overwhelmed.  On the one hand, she knows that she is providing him the absolute best care that he could possibly receive.  But on the other hand, she knows that the price for this care comes at her own expense. Whenever I talk with her, she sounds completely worn out and sad, which breaks my heart.


Within the past few days, my friend has finally determined that she really needs help to take care of her husband and that help is beginning to take the form of an assisted living facility / nursing home.  But now, in addition to feeling exhausted, she is also conflicted and guilt-ridden with feelings that she's abandoning him. Even when, by all accounts to those around her, this is the most logical choice. Although, if she pursues the assisted-living facility option ... it could still be several months before he is admitted.


What worries me and keeps me up at night, is that caregivers are at an increased risk for illness and depression; especially if they do not receive the necessary support from family and friends.  I've done some research - but am really at a loss for what exactly the best support is that I can provide to my friend, especially since I no longer live directly next door.  If anyone has any advice or suggestions, I'd be forever grateful. And if not, please keep the victims of this disease and their caregivers in your heart.

They are facing an incredibly lonely battle, each and every day.


  1. Jen, that is heartbreaking. I can imagine the helplessness you feel not being close to these friends. I am praying for them right now. For God's strength and for the peace that only He can give.

  2. Hi Jen,
    I studied gerontology in college and specialized in Alzheimer's disease and related dementias. The best advice I have for your friend right now is to call the Alzheimer's Association RIGHT NOW. Ask for a list of adult day centers, respite care information, support group information, a brochure for the safe return program and anything else that they would know about in her area. So much varies from state to state (and I live in PA, I am guessing she is in CA?) that I can't give very specific advice, but I would definitely start with a call to the helpline.


    Feel free to email me with any specific questions, and pass along my email to your friend if you like: krissyevansphoto@gmail.com

    I have worked in adult day centers, assisted living facilities, I volunteer for the Alz. association and before baby #3 led a young-onset support group.

    Thank you for trying to help your friend.

  3. i have no experience with this disease, but my sister has a 27 year old son who is ventalator dependent, and cognitivley delayed. Because of this, she has often expressed the dismay at knowing she will never have a 'normal' life. I will keep your friend, and her husband in my prayers. And all family's who are facing difficult decisions like this. I know I have told my only child that if she ever needs to, that she should put me in a home. That in my heart I will understand, even if my mind doesnt at the time.

    1. I've had that very conversation with Charlie. I wouldn't want for his entire life to pass him by - while he is spending all of his energy caring for me. Of course, if the tables were turned - - I know how hard it would be to put my loved one in a "home" and I'd probably do everything I could, for as long as I could - to keep them with me.

      Blessings to your sister and nephew; they are in my heart.

  4. This won't help your friend much, but it's great for you or anyone on the outside looking in... a book called Still Alice. Very powerful and gave me a whole new perspective on this cruel disease. My heart goes out to her.

  5. This could be my mom you are talking about. Exact same situation, although she is not ready yet to take him to assisted living. What I've found that she most wants is 1) people to treat my dad like a person and not inanimate object or annoyance...actually try to have a conversation with him, although it's not easy, and 2) affirmation that she is doing the right thing and is a hero for doing so.

    1. Yes .... it's exactly that, whenever people come over - my friend always makes a point to encourage people to talk with him, too. It's not always easy - but so, so important. I don't think she's "ready" to take him to assisted living, either. That's what makes it so difficult, she doesn't want to - but probably needs to, for her own physical and mental wellbeing.

      When I spoke with her last night, I told her that she was a hero and I could tell she really appreciated hearing it. Thanks for that reminder...

  6. If the shoe were on the other foot your "friend" would not want to exhaust her partner.....she must think of herself and what's right for both of them at this stage - sad as it may be - and it is sad. I pray that you can make your friend understand she must find a place for her partner soon - it's too much to handle

  7. It's such a helpless feeling trying to support a friend without knowing exactly how to help. I'm sure lending you ear is a blessing for her.

  8. Thank you so much, everyone.

    Krissy, I am passing your e-mail address on right now. :)

    1. Thank you Jen! I will email her back.

  9. There is a woman in our neighborhood who takes care of her elderly father. I'm not certain of what his physical ailments are, but every morning I see a bus pick up him up for 'adult day care' and then they bring him back home late in the afternoon. There are actually several buses that I see in my part of town from different centers that do that. Perhaps that would be a good break if there is such a thing where she lives.

  10. I cared for my Grandfather as his Alzheimer's progressed so my Grandmother could have time for herself to run errands or see friends, whatever she wanted to do. Grandpa and I would do activities he loved, but that didn't require leaving the house except for the occasional walk around the neighborhood. My suggestion for your friend would be to have a good friend of her husband's come over once or twice a week for a few hours to do something her husband enjoys and is still easy and safe for him to do. This would allow her to have a break without having to worry. Also, once she is really ready to pursue a care facility for the long term she may want to look for one that would allow her and her husband to live together, but still provide the support they both need. I live in Iowa and there is a wonderful facility here that offers that and if she could find something where she lives it might make her decision less difficult. You are doing a wonderful job just listening to her, supporting her, and reaching out to others to find ways to help her and I know that means a lot to her even if she isn't expressing her gratitude at the moment.