Hi AC Forum,
I hope you are having a good Sunday!
My dementia mom (96 yrs old) cannot focus on anything for more than 2 minutes. She is so fixated on the past and getting away that those thoughts are continually on her mind.
I tried watching TV (Lucille Ball program) last night and she keeps looking out the window or looking down and never even watches the TV. There are funny parts where I laughed and you probably could have waved your hand in front of her face and wondered if there was anybody home.
She woke up this morning asking why she is at our house (now 16 months and same thing day after day). I have work I have to do at home before I go to work tomorrow. Washing, house cleaning, meal prep and I don't have time to babysit her and sit with her all day long.
Caregivers find her frustrating and I'm lucky they come during the week when I am working.
Your experiences or thoughts?
Thanks,
LastOne
By Martha Larche Lusk This article was a beautiful message to all. In my case, I am in a position to relate to the emotions and feelings of this writer, for I am a caregiver of a bed fast husband that will be 81 this month. I turned 81 this past May of 2015. Our son is caring for us financially in order for us to continue being here in the home. We are what some would turn broke, but not broke enough to have necessary needed assistance from outside the family. That letter could well have been written by me. I could relate to it so well. Thank you for sharing. joylee
May I ask if your Mother is on any medication to slow down the dementia? Mine is and it has helped. Although every day is still "Ground Hog Day"! I find it helpful to speak as you would to a child, very simply and patiently and slowly. Get their attention first by looking directly into their face, smile, make whatever you have to say sound like fun, even like a game as you would with a small child you are trying to teach. My Mother and I have lots of laughs together because I have finally found a way to help through each day while she deals with this sad, sad fog that has encompassed her brain. I pray that I can stay strong for her. I always try to remember she is not doing this on purpose, there is no way my Mother would ever have wanted to be like this. I hope you find a way to help yourself and your Mother. God Bless.
I've copied it and intend to read it whenever I feel myself growing older, but also when I'm tempted to be short with my father. It will be a reminder that he sees life from a very different, and a very compromised, perspective than I.
I did Google it and found that it's an excerpt from a Chicken Soup for the Caregivers' Soul book. I'm tempted to read the book, which I believe I have, but I'll probably use up all the remaining Kleenexes I have.
Thank you for sharing this very moving revelation of a woman growing old.
Through My Mother's Eyes
By Martha Larche Lusk
My daughter, do you have any idea of the fears that haunt me? One is that I'll no longer be needed. Another is that I'll become a burden. I break out in a cold sweat when I think about having a stroke or an accident when I'm alone. This worry is alleviated somewhat by wearing my Lifeline Help Button that connects me with a hospital emergency room, but what if I couldn't press that button?
I live in terror that I might have some kind of lingering illness. And this fear flows into another fear - such an illness could wipe out my savings, destroying my very last shred of independence.
Do you realize how much of my precious freedom I've lost? Consider, if you will, having to depend on someone to take you to church, the market, everywhere. Once I was master of my own transportation. I could go anywhere I wanted, anytime. In our society, the automobile is an arm of independence. For me, old age amputated that arm.
I know my elimination reports bore you at times, but at my age when my body lets me know it is cooperating, I like to share the news; another accomplishment in another seemingly insignificant day.
Octogenarians are proud of any accomplishments, and one in which I take great pride is that I've conquered city living, and in my own apartment to boot. When you moved me here years ago, it wasn't easy to leave the small town that had been my home for almost my entire life, but I adapted. Yet sometimes the longing to be back in my hometown brings tears to my eyes.
But then sundry things cause me to weep these days. Some of the tears you don't see, like when I remember the two husbands I outlived. Or the tears I shed when staring at my one-sided flatness where a few years ago there was a breast. When I contemplate the chance I might someday face the cancer monster again, extra tears well up.
More often than not my emotions erupt with the hormonal spontaneity of a teenage girl. But at least emotions prove I still care, I still hurt, and I still love. Emotions prove I'm alive even though my life has taken some bizarre turns. One example is that I've lost my adult status. Yet no matter how many motherly duties you may perform for me, I'll never be a complete child of yours in the same way you were mine.
Although I'm deeply grateful that I have you to help me, I cringe each time you're forced to take over another of my tasks, such as balancing my bank account. I'm angry that I can no longer do it myself. I could tear that bank statement to shreds when I remember all my excellent office skills during those many years I worked. Perhaps if you'll now try working an algebraic problem (since algebra was never your favorite subject), you'll understand how I feel.
It's not only the bank account. You've taken over Medicare and insurance forms also. And now you must dispense my medicines, too. Over and over, day by day, I'm rendered more helpless. For every chore relinquished, old age claims another little chunk of me, making me fear the day I will be completely dependent.
Therefore, so long as I have a wee scrap of independence left, may I offer some loving advice to you, my daughter?
Don't fret when I eat a food not included in my medical diet. I know as well as you that it's wrong, but some pleasures are worth the sacrifice. To sneak a forbidden bite of a favorite food is just about the only adventure left in my life.
Try not to criticize me for what you see as clutter. While you choose to put things away, I find it convenient to leave them out, saving me steps and energy.
Show patience with my physical slowness. A quick step for you can be a slow painful one for me. Pain is my Siamese twin.
Let me talk, if I choose, about the past. Compared to the limited future, it's often more comforting to remember what has gone before instead; and if in the process of reminiscing, I repeat myself, try to overlook it.
Everybody forgets sometimes, even you; grant me the same human frailty. Forgetfulness doesn't always mean senility.
Let me complain about the weather. Realize that for me there's no perfect climate control. My personal thermostat responds to allergies, thinning blood, and aching joints.
Please don't push your way on me too much. Your way may not always be best for me. I'm not even sure efficiency is all that important anyway; a jumbled grocery list isn't the end of the world.
When people address you concerning my requests, bypassing me entirely, stand up for me; I still have a brain, as well as the ability to speak for myself.
I don't like to whine, but please spend as much time with me as you can. I love you, and I enjoy being with you. Contrary to what you might think, I'm aware of the toll all this responsibility has taken on you. It shows in your face. To take on the parental task of caring for an elderly child is to look in a mirror and see your own mortality. I can't help being a constant reminder of your future. And I know all the devilish challenges you'll face.
Now for my most important piece of advice, which is experience-borne. Strive to grow old with courage. I pray that in the future you may know more of the joys of old age than I and less of the trials. And may you always have someone like you, someone who cares.
You have my sympathies. I'm not an expert. I was just wondering if she is trying to "go home" to a place she remembers as her home in her distant past, her childhood home, maybe?
Is there any way you can place reminders of her early life (like a photo album)near her so she can get cues that she has grown up, raised you to adulthood and now living in your current home?
Try playing music from her young adult years. I heard it works wonders.
Good luck, take care of yourself and continue your good work with your mom.
You have my sympathies. I'm not an expert. I was just wondering if she is trying to "go home" to a place she remembers as her home in her distant past, her childhood home, maybe?
Is there any way you can place reminders of her early life (like a photo album)near her so she can get cues that she has grown up, raised you to adulthood and now living in your current home?
Try playing music from her young adult years. I heard it works wonders.
Good luck, take care of yourself and continue your good work with your mom.
I share your frustration with the inability of your loved one being able to do something one day and unable to do the same task the next day. I see the same thing with my husband. He gets irritated when I check on what he is doing...says he feels like he's living in a fish bowl. I have to know what he is doing, because he may be putting the fabric softener in with the detergent (really happened). Or he's rearranging cabinets...like he's going to remember where he put things. Sometimes it's funny and I just laugh and sometimes it's very vexing and I try not to scold him...he's only trying to help.
I have had similar issues with my mom. She has been with me since 2012, and it is very frustrating at times. My mom use to ask to go back to her house everyday and all day. It got on my last nerve. I use to cry my frustrations out and ask God to show me how to deal with her current state. It may work for you and it may not but I have learned to take things minute by minute or hour by hour. I used to just say. Mom this is our new home and i used to say im going to live here and help take care of you. The question went on for a solid year. I fixed her room up with a few pictures from her house, and tjings continue to get a little better. Taking 1 hour and being to yourself helps- no work no cleaning no mom just you it gives you a chance to regroup. Also i have learned from reading up on the alzheimers that we as caregivers will get mad and frustrated with our parents and 2 minutes later they dont even know what they did or said. So you have to figure out a way to keep your frustration down and still take care of mom. If you dont take care of yourself, you cant take care of your mom. And she needs you. Be blessed
I'm so sorry that you came to this forum for help and understanding, and got such criticism! Clearly, you were frustrated and in need of advice from others. You are an incredible lady to be juggling so many things, but you are only one person and you need a break! Yours mother sounds very much like mine. My mom is 88 and mean, difficult and needs me with her 100% of the time. She even wanted me to sleep with her. I have had to retire from my job of 27 years to care for her. The NH experience was nearly identical to what you describe. I truly don't know how you work 50-50 hours a week, still try to hold onto some kind of personal life, and care for your mom. My heart goes out to you. You are amazing. PLEASE PLEASE look into some kind of respite relief in your state or community. You must take care of yourself dear.
In one of your post you say your mom is wailing all day long. Have you discussed treating her anxiety with medication? If she is extremely anxious and it is making her uncomfortable, I would try to help ease that.
Based on your description of your mom's behavior, it sounds very similar with most dementia patients. I realize it can be stressful to deal with, but I can't imagine a professional who is supposed to handle dementia patients having a problem with it. It is dementia. That's how the dementia patient behaves most of the time. That behavior can often be seen in Memory Care facilities. Those who can't work with that perhaps, should not be caring for her.
How long has your mom been at this stage? I will offer that with my loved one, certain things did change as she progressed and most of the repeating, disagreeing, questioning, talk of home, etc. has gone.
I just couldn't read your posting, and not comment on what you wrote.
This is your Mother.... and you need to be there for her! How very selfish and self centered you are! Shame on you!! of you! You remind me of my two sisters. Why don't you read about Dementia. This is a terrible illness that your mother has no control over and did not choose to have. Shame on you, you discuss me!
You are the smile in my day today! Thank you!! (Big smile).
Have fun!
LastOne
I'll give you some time to change the settings. Right now, my vacuum cleaner and dust rags are calling out to me, and I must respond!
I believe it through communication and sharing that we are able to sort ourselves out through reflection and thinking. I think it is something that has been in your brain, but just now surfaced.
Here's to getting a piece of your self back and some of your life! (raising glass and a smile).
Best regards,
LastOne
But the comments in your last post reminded me how I used to feel, and how far away I am now from that feeling. In one of my favorite tv series, a navy lawyer comments to his father that he's "so far away from what he wants to be he doesn't even recognize himself." I've thought of that observation often and think of it against I've read your posts.
Well, it's time to go home. To heck with lawn mowing - I'm going to clean and sort out old cookbooks to give to Salvation Army so I can make more room for my garden magazines!
Thanks for unintentionally helping me back to my old self.