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
These are hits for "dementia, short term memory": https://www.longtermcarelink.net/ref_state_veterans_va_nursing_homes.htm
Memory loss and inability to focus can be characteristic of dementia. It will help to learn more about it and recognize that your mother can't help it - it's not her fault and she's not doing it to be disagreeable.
If you ever get dementia, you'll probably be the same way.
You also wrote:
"Washing, house cleaning, meal prep and I don't have time to babysit her and sit with her all day long." Have you thought about getting a caregiver for her on these days so she won't be alone?
And frankly, if you feel you're "babysitting" for her, perhaps it's time to examine whether she's in the best place and getting the best care. What's more important, your mother or cleaning house and washing?
And why not bring your mother into these tasks to help you? She can fold towels to help with the laundry. Even if they're not folded to your specifications, it's something for her to do.
Before I put my question up, I looked things a dementia person could do to keep them occupied. I've tried all of them - there were 10 listed on the site. Hence my question here - in case someone had something more to share than what I already found.
If I am in a dementia state - I'll be living where I can terminate my life. It's cruel to put anyone through dementia or to go through it yourself. Just my opinion.
Yes, a clean environment, work that has to be done for every day living IS IMPORTANT to me. This is my house and I cannot live in a mess. I enjoy a clean house. It is comforting, relaxing, and satisfying to me. And that is all I have these days.
My mother can hardly fold a paper bag. She has tried folding towels, pants, and gets frustrated within in 30 seconds. Her shoulder hurts, she has the clothes inside out and is cussing the whole time she is doing the folding and then says, I'll do it later.
She begged to vacuum - mind you she is in a wheel chair. We set it up for her. She couldn't push the vaccum and it is a canister style - so it's not like it is as heavy as an upright cleaner. And she complained why we had such a heavy cleaner.
She is not able to do anything but feed herself, she needs help getting up sitting down, getting in bed and out and getting dressed. She can't even pull the hood of her jacket over her head without it being twisted up around her.
Yes, as I stated I try to get someone for weekends, however, my mother is a difficult person and she drives the caregivers crazy also. They run.
Yes, I think my life is important too and I've been taking the back seat on the long bus for 16 months and it is getting to me.
My dearest mother will wither away and die in a home. She doesn't have the money for a place that will sit with her one-on-one that is required for her and to keep her mind occupied. And she was in a rehab facility for a month before she came here and it was miserable for her and for me. She cried all the time, begged to go home (similar to what she does here) and also had the home call me during my work day at work. I would rush over there and try to console her. And that was every day! I spent on average 3 hours a day steady with her at the rehab home. Besides doing my 50-60 hour a week occupation to earn an income.
I'm doing my best. It might not be good enough in others eyes.
I don't get respite. I would love to have some.
I'm under the impression that dementia affects people (the patient) because of their history and their expectations and what they are able to remember and what they truly want. Each case must be different, but seem to have shared commonalities.
Thanks for your comments, Garden Artist.
LastOne
BTW, I wonder what kind of caregivers you have if they can't deal with her behavior either, they can't be very experienced.
The two I am able to retain are good - one is an LPN, and she even said, I could do want you are doing (my profession and taking care of my mother), and that is her line of work! The other said, she couldn't deal with my mother two days in a row as her constant waling about going home is ALL she talks about. It drives sane people crazy.
Each have worked with dementia patients for about 12 years.
LastOne
I guess walk a mile in their or my moccasons.
Your post helps explain your frustration, and I understand the situation much better now.
I think your mother realizes her limitations and that causes her to be frustrated and unable to complete the tasks. Sometimes people just sigh in exasperation or just sit and quietly contemplate how much they've lost. I think all responses express the frustration with their lives, and I do understand that.
I most certainly wouldn't disagree with you on the frustration (and cruelty) of dementia.
And I also understand better with your explanation the need to maintain control over the house - you poor mother has chaos in her mind, you see it, and you work to avoid that in your household life. It's understandable.
Thanks for your thoughts, but the one on "...And I also understand better with your explanation the need to maintain control over the house - you poor mother has chaos in her mind, you see it, and you work to avoid that in your household life. It's understandable."
No, I have ALWAYS had a clean house and it always was orderly. My need is partially due to poor eye site and knowing I can find things where I last put them and not trip over things. But a clean house and work completed used to allow me to go have fun (of which I don't get any since she arrived). A clean house is just a nice place to live and I like to live in a nice environment. It's not a need to avoid my mother's chaotic mind. A clean, nice, comfortable, eye appealing home is just a nice place to live and it is efficieint. My husband and I have always enjoyed that.
And yes, it is one of my frustrations now. I don't get time to do the work because I am babysitting my mother all weekend long.
LastOne
Thanks. And even though I have research this dementia thing and live with it every day I don't know everything and everyone has experiences that may shed light or help someone else' situation. I certainly don't know all and will never claim to.
When an question comes up from this list and says "can you help" so and so with this question, I don't feel qualified to advise someone else.
I will admit that I am not the right person for the CG job, but my mother has no one else to advocate for her or help her. She made me her DPOA back in 2001 when she was going into open heart surgery because she trusted me more than anyone else of her children. I feel dutiful to her to help her the best I could. I never saw myself doing this kind of work or being in this situation. It's not my bag. But I don't have any other answer for her other than to put her in a home. I know the results and would feel horrid the rest of my life.
My mother and I were very close and she was my best friend, but that was a mother in a different life before dementia. I never dreamed she would be like this or I would feel so angry and frustrated in my life trying to help her.
LastOne
P.S. Sorry for all the typos in my notes today. Usually I'm better at typing.
And gradually I began to feel a sense of loss of control. So when I set aside time and do some floor to ceiling cleaning, I feel as though the house and dust bunnies aren't usurping my rights.
I've also read of similar situations, so I was also extrapolating to yours. No criticism or reactionary behavior was intended.
Guess I better shut up now before I really put my foot in my mouth!
You cannot do it all, nor can most. We all reach the breaking point and need to understand that we are only human. Consider the options available,and decide what would be best for mom, but more importantly you.
I also detest, and I mean really hate, the advice that other people feel free to give me....advice that usually starts with "...well, why don't you do (a), (b), or (c)?" ...or "you mean your father is living alone - you're not taking care of him?"
As if I have nothing better to do than tackle issues which I already know can't be solved, or as if I feel that either of us would benefit from living together or that distance caregiving isn't "taking care of" someone. Grumble, big grumble!
Thanks for clarifying and sharing your experience. We worked at having a house that was wonderful to come home to and be in. Living here was an nice experience, not just a place to hang your hat, sleep and leave to go somewhere better. It was nice. Understand my environment is gone. Between some caregivers we had that were stealing, some who would go through our personal belongings, I had to pack away my things I enjoyed and made my house a home to me. I have put up with strangers in MY house for this whole time. Caregiving and having strangers in your home, your haven and safe places changes that scenario entirely and it affects my living experience and me and how I interact. I am envious of those who have a haven and don't know what a gem they hold in their hands.
I would be much happier if my mom were able to be in her home and folks could go there. It would be an entirely different situation. But that is not the case and will never able to be (without having to go into a long explanation).
I have to say, that dealing with this situation sheds a light on preparing yourself for the future now.
Take care GardenArtist, I appreciate your thoughts always.
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.
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
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!
You are the smile in my day today! Thank you!! (Big smile).
Have fun!
LastOne
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!
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'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.
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 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.