I feel like I'm the only one who feels this way...

Holly H

I feel like my mom is already gone. She still knows me and she can have a conversation, but her short term memory is gone. In a 5 minute time period she will say the same thing or ask the same question 5 or more times. She insists I never call but I call every day. When I visit, I will talk to her the next day and she will not have any recollection of the visit. I feel so guilty, but I am lacking motivation to talk and visit with her.I know that it is important for her to feel comfortable and taken care of, and my brother and I do take care of her. But to "hang out" or chit chat like we used to is a lost cause. I really struggle with how to come to terms with this. My mom was my best friend. I'm not sure what to do. One day I cook a her a meal and we watch TV and we talk ... and the next day it's as if it never happened. And that pain is so difficult to bear that I find myself not wanting to go through it again. I feel so guilty about this. How do you reconcile and make this awful time somehow a positive time? I live a few hours away and have 3 kids as well and I often wonder if I lived closer and our visits were consistent if it would make a difference. I feel like the worst daughter in the world because I just keep thinking she's already gone so what's the use in doing anything more than just keeping her safe and comfortable? I'm a better person than that sounds, and that's why I'm reaching out. I hate how I'm dealing with this.

M1

Holly, no need to feel guilty. I have the same issues with my partner who is in memory care, and I think a lot of us feel the same limbo/purgatory/ whatever you want to call it. I posted somewhere else today that I find the fact that she has no sense of time is merciful for her. It's hard on me, just like the repetitive conversatons are hard on you--but I hope, hope, hope that I am right that it's easier on her because she has no memory that the same thing is happening over and over and over. There is nothing but the current moment. we have already lost the people we loved, and we are left taking care of the shells until death releases them.

Shan

Holly, you are not alone in your feelings or what you are going through with your mom and you have nothing to feel guilty about. This disease is excruciatingly difficult to watch a loved one progress through the stages. I agree with M1, it is a purgatory of grief as each step takes more and more of our loved one and the special relationship we once shared. Before my mom was diagnosed, our very close friendship changed in ways that broke my heart and made me wonder what I was doing wrong to provoke her to pull away and get angry at everything and nothing I did. Daily phone calls where we could laugh and joke or commiserate with each other became less frequent and shorter and often ended with her getting angry at nothing, hanging up on me and then telling my sisters I keep hanging up on her and am mean. I was so lost, hurt, and confused. This went on for several painful months until my sister took her for a screening and she was diagnosed with mild dementia. The diagnosis was terrible news for the most part, but the small silver lining was it explained what had happened to our relationship and it had nothing to do with her not loving me or me doing anything that hurt the relationship, it was a disease that she could not control. I was and still am so devastated by the loss of my best friend, but I know my loving mom did not choose to distance from me, this awful disease took her away. I guess I can find a tiny bit of comfort that she didn’t choose to pull away from me and if she could choose otherwise she would. I can also relate to your frustration and sadness that your mom doesn’t remember your visits or calls. My mom does the same thing now that she’s progressed and is now in MC. And I feel the same painful feelings weighing whether to reduce the frequency of visits and calls due to how painful it is on us versus the fact that our moms don’t seem to remember. As I was struggling with this decision myself, I read an article that was in the monthly family news letter from my moms memory care that addressed this topic that was very helpful to me, hopefully it can help you too. It acknowledged that visiting a loved one with dementia can be physically, mentally, and emotionally draining and it’s common to feel that it’s not worth it when your loved one doesn’t even seem to remember all the time you are devoting to them. It went in to clarify that even if they don’t remember when you visited, what you did, or what you discussed, they do react to and remember the feelings you brought them during the visit. A light hearted happy visit can help your loved one feel safe and loved when they often feel scared and alone. While a visit that might involve anger or conflict can cause them to act out more afterwards. The article also advised that short visits are better than long visits. It’s easier on both the one visiting and the resident receiving the visit. Because our loved one has lost the concept of time, they don’t know if our visit is an hour or five hours long, they just feel the effects of how they felt while you were there. I know you said you don’t live close and you wonder if living closer so you could visit more frequently would help her remember and improve the relationship. With what you described as her memory retention abilities, she sounds like it’s similar to my mom’s and I can honestly tell you that I live only 10 minutes from my moms MC and I visit 3-4 times a week and even that frequency doesn’t make her remember the visits and doesn’t alter the relationship dynamic. So, no I don’t think you should feel guilty that you live too far away to visit frequently. However, I would hope that you can get to a place where you can still do regular visits, but decrease the duration to what you’re comfortable with, and can find peace in knowing that your visit is leaving your mom with feelings of love, joy, and safety even if she cant tell you that. Also, you can try to do fun activities with her so the visits are not just repetitive stories and questions. Go for a walk, watch a funny TV show you both can laugh at like Americas Funniest Videos, give her a manicure, read a book, do a simple cooking project and enjoy what you cooked together, coloring, easy puzzles that can be completed in a short visit, reminiscing over a photo album you bring to the visit. Yes, we’ve lost the relationship we used to have with our moms, but we can still create moments of joy together while they are still here. Too soon, we won’t even have that.

harshedbuzz

"I live a few hours away and have 3 kids as well and I often wonder if I lived closer and our visits were consistent if it would make a difference. I feel like the worst daughter in the world because I just keep thinking she's already gone so what's the use in doing anything more than just keeping her safe and comfortable? I'm a better person than that sounds, and that's why I'm reaching out. I hate how I'm dealing with this."

Probably not.

When my dad had dementia, one of my dearest friends was going through it with her dear mom. We used to catch up every couple of weeks for a 4-hour lunch to trade support and war stories.

Her mom had been an amazing mom to her and when she was widowed in her early 60s, mom moved to a house around the corner from her daughter and assisted with my friend's kids. She had dinner started and the house cleaned when mom and the kids got home from school. She helped with 2 cub scout dens, pet sat, maintained a big garden and was generally a delight.

When her dementia became obvious, my friend moved mom into her home. She pulled out all the stops including putting the toaster oven mom could still work on the counter of her fancy pants designer kitchen and rewiring her gas dryer to run on electric so mom would be familiar. Without young kids, her situation was different than yours. She was able to devote her whole being to mom's care-- her sons were away in college, her husband was splitting the month between home, Europe and a city on the other coast for work and she took FML.

And yet, when I asked her how she was holding up she said "It's not easy. It's like there's this little old lady who lives with me. She's pleasant enough but she's just not my mom." You are not alone in this feeling.

Babblingbrook

You are not alone. I just said to someone the other day, it’s like I physically see my dad right in front of me but he’s not really there. I try and always leave him in a good mood so he feels good even if the visit was rough.

Quilting brings calm

You are not alone. The only difference is that I was never best friends with my parents.

This disease has made our conversations as difficult as fingers on a chalkboard. Repetitive conversations, confusion, complaints about things she never used to complain about. It’s as if I’m her counselor or a babysitter rather than a relative. Step-dad is paranoid, has some voice issues, so not as much talking - but is starting to make up stuff.

There is really no back and forth relationship- it’s now me seeing to their care and needs. I don’t discuss much of my life with them because mom just tends to get upset or overly focused on the least little detail.

MonicaG

You are not alone. Yesterday was Easter and then today was a doctor’s appointment. Two days in a row with my mom is so taxing on me. It was so brutal. I came home and had to take 2 Advil. It’s not only the repeating, the repeating, the explaining, the translating, the constant awkward laughing, but the “ I want”. It’s like being with a toddler. I want to go out to dinner, I want to go shopping, I want a milkshake, I want my jewelry (she’s in AL) I want to go on vacation, where are we going on vacation. I’m still recovering right now. I feel awful for being so annoyed, but this is a really cruel, cruel fate. I still can’t believe it. It’s like living a nightmare. All the above responses are so spot on. So, no, you’re not alone.

maggurru

I went through a lot initially when she converted from a very happy always laughing person to a very angry one. I went through the guilt of knowing she is angry from her desease but, letting it get to me. I felt I should not take anything personal because I am aware she is sick. But on the other hand it would affect me in a terrible way. You just have to drill in your head she or he is not the same person and is not doing anything on purpose. I did have to step away and not come around as much for a little. Now she is not angry with me anymore but, still not as happy as she was before. I have a care giver so I was lucky to be able to take some space to deflate. And I live one day at a time with her because you never know what to expect. I just try to work on myself and try to do things that will make me feel better because, for the time being I have control on how I feel and act- my mom does not.

Quilting brings calm

—-Yesterday was Easter and then today was a doctor’s appointment. Two days in a row with my mom is so taxing on me. It was so brutal. I came home and had to take 2 Advil.—

MonicaG- the snippet I quoted above from your post is spot on.

Yesterday I took my parents to their annual doctors appointment, lab work, lunch and then x-rays for Mom. Add in travel time, and it was almost 7 hours. Mom kept wanting to go home. Every move we made had to be repetitively discussed. Why are we getting lab work? Why are we going to lunch? Followed by I need something to eat. Why am I getting x-rays? Why can’t he make my legs not hurt?( neuropathy is managed, not cured) Step-dad thought he was getting x-rays too even though I kept telling him he wasn’t. The annual paperwork at the doctors office is almost impossible - they can’t hear me ask them the questions, they don’t offer realistic answers to the questions about their activity, pain, fatigue, etc.

BookBuffBex

I'm new here and feel so much better reading these messages!!!! @Holly H - clearly you are not the only one who feels this way!!! My mom was my best friend too and it is so hard to physically have your best friend, but emotionally know that they aren't that person anymore. I'm still learning how to deal with my mom and her repetitiveness, impatience and impulsiveness. I think it would be really hard to motivate myself to drive several hours to see someone who isn't going to remember the visit. My mom is only 20 minutes away and I often have to force myself to visit.

It's hard to reconcile, but I think you will feel better if you accept that your mom is different and actually allow for some emotional distance. Maybe call every other day instead of every day, working towards once a week phone calls? Or decide that you will only visit once a month, whatever works for you and your life and schedule. I try to keep my visits to once a week at most. I only see my parents during the week if I have to take them to a dr appointment. It's not easy, but you aren't alone.

wyoming daughter

Based on all the replies, you are absolutely not alone. So painful, but so common. We all struggle with this. It's heartbreaking for sure. If the times you share makes her happy in that moment, then that's enough. I live less than a mile away from my Mom, we went through loosing Dad a few years ago, moving her out of their house of 40+ years, living with my husband and I for about six months, and then moving her to assisted living a mile from us. She should be in memory care, but I am very close and available, and see her often. It's like each decline our loved one goes thru, it rips a new hole in our heart, and we try to close up your heart so it doesn't hurt, but of course, that's not possible. I'm so sorry you are dealing with this, and sorry we all are, but this discussion board is the place to go when you are hurting, cuz we are the only ones who know how it feels. Hugs to you and to all of us and our loved ones.

doublek666

My mom started having noticeable memory issues, she could no longer drive to our house by herself. She used to cook or bring food over for Holidays and get togethers. The food quality and items brought started to become suspect. not prepared like it used to be or not the item discussed. There were odd statements or behavior. It was observed, it was discussed. I didn't think much of it. Her male companion passed away from cancer. This very nice man had probably been helping my mom function, more than we realized. Family members began reporting odd conversations, and that I needed to gain POA. This all seems pretty overwhelming at first. There is plenty of information out there, I had help and advice offered and given. Things began getting serious around the Holiday season last year, 2022.

I had been building up obligations and a very busy schedule over the post pandemic years, making up for lost time in work and multiple bands I play in. My mom and her condition were too much for me to bear. My mom and her condition were too much for me to bear. I attended a doctor's visit. A memory care specialist was available and we scheduled that appointment. As the financial issues started becoming apparent, I was able to start getting caught up on the bills, taxes, paperwork. This was during the busiest time at work. I was especially busy personally and with my music. I was already stretched thin, physically and mentally exhausted. I had too much on my plate, and the coming year was packed with things I was committed to see through, including time away for family, a brief tour, and a few other out of town trips. I was determined to step up and help my mom as well. As the new year began, I had survived the Holidays and was desperately trying to keep all the plates in my life spinning.

During the second week of January, I took mom to the Doctor. The next day I had 2 employees surprise me by not working that night. I ended up working about 14 hours, longer than I had hoped that day. One of the owners of the business (mom had dementia, I had to witness the whole thing until they placed her in MC) crossed some boundaries with me, and triggered a spirited interaction. While I remained calm and professional, the situation led to my termination. At this moment I realized I was not handling the stress well. I was overwhelmed. I looked into paid FMLA, so I could help my mom. I submitted notice of impending leave, and was terminated soon after. Before this I apologized and requested a meeting and, regular meetings to address any concerns. Ultimately, there was no probable cause or valid reason for the termination. After 7 weeks I eventually got approval for unemployment insurance. I eventually got approved for the paid FMLA. I have been getting her situation under control. I still have a few things to get done while I have the time, I'm surprised I was able to manifest this. My mom is still mild. I had grand plans about what I would try to accomplish. It is extremely exhausting being with my mom. I have been reading the '36 Hour Day', done research, found the available contact and relative community resources. We have found an in-home care provider, and prepared the process to start that service. I work with her every day. She got some new medications. She is doing ok for now; she still drives to the store and to get coffee at a stand or Starbucks. She can run some errands. She has been able to choose menu items sometimes. She is still taking care of a dog and some birds. She is bathing the dog and herself. She is washing clothes. I'm encouraging her to eat fresh food and drink water. She seems pretty happy in her routine, right now.

I'm watching my mom very closely right now. She was officially diagnosed with non-specified dementia 2 months ago. I don't know how long this is going to last. I'm afraid I'm going to have to take away her car keys. She is very resistant to me de-cluttering her substantial collections of decorative glass, huge Angels, Picture frames, and hanging decorations, that make cleaning and organizing difficult. I have her drive us around, and she does fine. She doesn't go very far, and has lived in the same area for over 40 years. She has never really liked doing a lot of cleaning, and has nicely curated and collected some things. There is so much in her little condo. I know big changes are coming, but she really doesn't need 8 hours a week (minimum) at 40$ an hour just yet. It could be very soon. That 320$ a week, I could get her into a SHAG apartment for that cost. I'm trying get her in the best financial shape possible before it all gets absorbed by LTC. Right now, I want her to enjoy whatever she can before I have to turn her life upside down.