First off, I know I am so much more fortunate than so many others, so just want to say that to start.
My mom is 96 yrs old and has moderate dementia. We have a helper come monday-friday from 9-12 and her neighbor brings dinner daily. I go on weekends and take care of all her needs. I call her every day and that is where I'm having difficulty. When she was cognizant, just last year we used to talk for an hour or two. Now that has changed pretty suddenly, well within a year or so. I'm recently retired, not doing much and I don't have much news to talk about. My life is pretty boring and she can't discuss daily topics anymore. I try to ask about her past to reminisce or anything I can think of to talk about. Some days are a little better than others but it is just so sad. I tell myself to be glad that I can still call and talk to her, just to say hi. I know how much I will miss that when she is gone. However, it just makes me so sad every day. I know this sounds shallow and selfish but it kind of ruins my day. I don't want to not call and know I need to re-frame this but I'm having trouble doing that. I doubt there is an answer for how I'm feeling. I can tell when we just don't have anything much to say we talk about the weather or some little something and then I just say- ok mom I love you and I'll talk to you tomorrow. It's still just so sad. Is there any way to ever feel better?? I know I'm grieving that loss. She has always been my one and only best friend. Maybe I need counseling??
Having a periodic conversation with a good professional counselor will not do any harm, especially since you’ve pretty well defined your needs already.
My own mother and I had a very troubled past until she was quite elderly, when we developed a wonderful closeness that remained until she died. Those lovely times together remain with me as cherished memories.
Have you tried to enter whatever subject she talks about, and letting that be the center of your conversations together? I presently visit a dear LO who is a two time Covid survivor. I’m so grateful to just be with her that whatever she talks about, no matter how detached it may be, can somehow delight and comfort me.
It’s not what it was when we were younger, but there are days when I feel amazingly uplifted by what conversation goes between us.
Whatever she says or doesn’t say, I can practically bet that the love you feel for each other has survived whatever cognitive skills have been lost.
By the way, I doubt you’re boring either. Please be sure that you’re doing a little something that will delight you or comfort you or cheer you EVERY SINGLE DAY. If there’s a caregiver group somewhere near you, you may be able to share some of your sorrows and concerns there, and you will be helping both yourself and others.
Hope you will soon find peace and comfort.
So none of that has helped. It is so uplifting to get some insight and
I am so grateful to have this group to open up to.
thank you, thank you!!!!
Yes, speaking to a professional therapist regarding your emotions would be very helpful. Having a fresh, objective viewpoint can do wonders for placing your emotions into a healthy perspective.
A therapist will guide you to formulate new thoughts and help you to accept what you are facing at this time and help you prepare for upcoming days regarding your mom. Of course, you will still be sad about your circumstances but you can achieve a more balanced outlook on your situation.
The one ‘constant’ in our lives is ‘change.’ Our lives are perpetually changing and it can be difficult to adapt. This is when we utilize the services of a therapist.
Best wishes to you and your mom. Keep us posted. We are here for you.
I never had sought outside help but I know it would help
thank you so much!
Sitting quietly with someone can be all they require. Or maybe listen to music together, or watch an old film (& doze off).
I was blessed last year to spend time with a lady who just wanted to look out the window at 'her tree'. Sometimes she hummed a song to herself or talked to the birds. It was enough.
Peace to you 🕊️
You are so right about the length of time.
Mom used to always want me to stay longer but now
sometimes I can tell she is ready for me to go.
If she knew we could just sit it might be more enjoyable
for her. I always feel like there has to be a dialogue going.
So, thank you. I'm learning new things!
You mentioned that your mother is your one and only best friend. That’s wonderful that you’re close! But It implies that you don’t have a circle of friends. And I’d guess you have less interaction with others than before, now that you’re retired? I may have missed the mark and interpreted that wrong. Apologies if I have.
Start trying now to cultivate new friends or activities, especially with being newly retired. Maybe at a church, or volunteering for a cause you care about. It’s not easy and can take awhile.
Of course no one can replace your best friend, and no one would want you to! It just helps to have your own immediate circle, and you’ll need that circle more than ever when your mother eventually passes.
If meeting people is too emotionally taxing right now, there’s a lot of help online, as you’ve discovered here. Many support groups are still meeting online. You definitely aren’t alone!
I loved reading your reply. So much what I needed to hear.
Yes, the feelings are all there and all over the place.
I do need to find some other friends, interests, etc. as work
was very enjoyable and kind of my purpose in life.
Thanks so much!!!
But when my mom got to be in her late eighties, early nineties her short term memory was shot and conversations became awkward, sometimes very one-sided because my mom would repeat the same questions and I would get frustrated and end the call early.
I found as someone on here said that eventually just being with her and sitting quietly and companionably ended up being what sustained my mom. Looking out the window together or just looking through a magazine etc.
I know you're sad and believe me I was sad too. When she died at 92 I not only lost a mom but my best friend as well. Please just try to enjoy the time you have left with her even though it makes you melancholy and know she appreciates you even if she may not be able to show it as much.
You do understand and I appreciate that so much.
It's so good for me to read responses from so many caring folks.
My mom says the same thing about me being her lifeline.
Thank you for bringing to my attention about just sitting.
When I'm at her house I usually am busy "doing" something
as I feel awkward just sitting with no conversation.
She doesn't want the tv on when I'm there.
thanks so much!!!
Thank you for your reply. I will give the notebook idea a try.
I'm sorry for your situation with your husband. That has to be
hard. Finding joy where we can is important, I agree.
Having a place to share is helpful too!
thanks again
My Husband stopped talking on the phone all together, if forced to be on the phone the "conversation" was very short and often the hang up would be abrupt.
I am going to add that for pretty much the last 8 years of my Husbands life he was non verbal. A word here and there, lots of noises but no conversation.
Is mom living by herself?
If so this may have to come to an end soon.
It is wonderful having someone from 9 until noon but there is a LOT that can happen between Noon and 9 AM. (this would exclude the bit of time that the neighbor stops by to give her dinner.)
She can begin to wander.
She can not realize the time of day and start dinner and leave the stove on. (disable it if it is not used)
All of this is part of dementia. It is much more difficult on the family rather than the person that has dementia as they do not grasp the concept of the loss of cognitions that we do.
Keep conversations simple. Yes or no replies and leave lots of time for her to formulate an answer. Sometimes it can take 45 to 60 seconds to process the question or comment and formulate an answer. I don't know about you but in 45 to 60 seconds I am on to a completely different subject! So don't change the subject or go on to another comment or question. Give her enough time to respond.
It is time to think about the What Next part of her life ......
Mom does know it's me, we are not to that stage yet.
You do give me things to be aware of and look for though.
The suggestion to wait for a response is very helpful.
I have caught myself doing something for her if she doesn't
respond as quick as expected. So the same goes for the talking.
Lot's of good info, thanks again.
I have thought about finding interests and hobbies. That is a good idea.
This forum is so helpful and I'm so glad I found it.
I may consider looking a therapist, good idea!
thanks again for your reply. it means a lot!
I’ve had to pretty much give up on the idea of conversing with my mother. She can no longer do the back and forth of conversation. Questions from me agitate her. She gets frustrated about her lack of memory, and that causes anxiety.
Once the anxiety begins, she gets in a dementia loop, repeating the same statement in one minute intervals.
It’s maddening, sad, and depressing.
So, now, when I go in, if she’s in her room, I just sit quietly and don’t really ask her to engage in a “visit”. I pray, or read a book, and I just sit there.
If I go in when she’s in an activity, she just gets crazy anxious to get back out into the main room where the activity is going on. Not because she likes or is engaged in the activity, but because it is part of the ROUTINE. Anything out of her routine makes her incredibly anxious.
When I leave a visit, I HAVE to plan something fun to do. Even if it’s just going to Lowe’s and buying a $3.00 plant. Anything to distract myself into thinking about what just happened. ‘Cause the little griefs just pile up.
You’re in a good place here. There was no instruction manual for this season of my life. But, though reading through others’ experiences, I’ve learned so much, and don’t feel so quite alone in this.
Colleen
It's good to hear someone else's way to deal with these
feelings. Yes, when I ask questions to try and keep the
conversations going it does bother her when she can't
remember. Best to just keep the phone calls short.
Love the idea of a pick me up too!!
Learning as I go.
thanks so much!!
So I’ve found that taking a shower after the mom calls to literally ‘wash it off’ does help!
Often I call when I’m cooking something - usually vegetables with garlic in a skillet, so I’ve got a side focus that smells good too.
Big hugs to you and thank you for bringing up this topic!
That is a good idea, taking a shower. Kind of shaking it off!
It's good that she doesn't mind the shorter calls either.
hugs back to you!!
Well, suck it up buttercup. You are extremely fortunate that you don't actually have the burden of being a caregiver to your mom. That your relationship with her was great your whole life. That you never had the dysfunction and abuse so many of us here grew up with, and then we end up being caregivers when our abusers become elderly and the F.O.G. sets in. Or we fell on hard times ourselves and moved back with an abusive parent.
You don't have any of that, What you do have is a lifetime of a cool mom that you love and are actually friends with. Want to trade?
Still, I understand your frustration because it happens to everyone who has elderly loved ones with dementia.
You need a social life for yourself that isn't about your mother. Since you're retired you can do volunteer work with causes of your choice to get out and meet people. Join a senior center yourself (if you're old enough). Become active on social media more. These are all things you can do that aren't just about you and your mother. Good luck.
Now someone I’m certain will tell me to get rid of them. Or at least Mom. But as I stated, I have children. A non working terminal husband. Bills up the behind. I get paid as a caregiver for Mom who had to lose everything she worked for to become eligible for full time care paid for by the state. Call me selfish but I’m trying to keep our home! A roof over ALL of our heads. Inevitably I’ll be a widow soon and alone soon. I’d rather not be indigent on top of all the sadness I’m already feeling. I did ask other family members for respite, a break from time to time. Still waiting for an answer after 22 years. I’ll assume it’s just not their cup of tea. Life is hard at times! I’m hanging on hoping for a light at the end of the tunnel!
Thanks so much for your reply! I appreciate it!!!
First, caregiving is so very difficult for many people. The changes in function of the aging is not easy. I once heard a very wise and seasoned woman say that depending on family members to serve as our very best friends can often be disappointing...for various reasons. Also, not going out of our inner circle hinders us from growing as "individuals" and becoming all they we were created to be. Additionally, it's easy to get caught up in being a "total rescuer"...which has downfalls as well. As adults, we need to detach from our families of origin in order to move forward and thrive. I realize this sounds a bit deep or "woo woo!" Here are a few things that have helped me:
1. Write on paper how you would like to "see" your life.
2. Review what you wrote at least once a week.
3. Buy or create something for yourself...that "you" like...not what you think your mom would "think" you like.
4. Start distancing yourself a bit. Send small notes and cards to your mom, but don't feel oppression if you decide not to call her.
5. Get physically active daily. A 5 minute walk is a great start!
6. Go somewhere different.. a group... volunteer...even if you find yourself miserable...reward yourself with something you like.
I think sadness can hit at very unsuspecting times, too. However, I think we all need to find ways to become excited about living the days we have left and thrive to our fullest. You can do great things, Linda! Sending you a big hug and lots of positive thoughts!
I really love all of your ideas. It is good to look outside the family, you are right. I appreciate your input and value all the advice tremendously.
Thanks you so very much!!!
LindaC11, I think you are a saint for calling your Mom everyday. You are doing much better than I am. Feeling depressed is a normal reaction. You've gotten a lot of good advice here on why self-care is so important. You have a lot on your plate. You no doubt have heard what has been said about the empty vessel - you have nothing left for others when you're running on empty. Do something nice for LindaC11 so you feel recharged to take on the hard stuff. Good luck and hugs.
Thank you so much for acknowledging the hateful reply.
That is funny, my 1st reaction was Whoa exactly, lol.
People who are hurting sometimes like to hurt others.
I thank you so much for being understanding and encouraging.
I have received wonderful advice from so many caring people.
I will take it all to heart!! I really appreciate it so much!!
Thank you so much for taking the time to reply. It means a lot.
Yes, I am in stage one for sure! Great idea about the journaling
I have been kind of hit and miss with it but doing it first thing sounds
like a good idea. Thank you for your prayers& hugs!!! I pray for you
and all the others suffering.
Thanks again!
My Dad is 83, he had open heart in 2015 plus his dementia is getting more and more.
I moved back in with them in 2003 to help take the pressure off my Dad.
Hang in there, take deep breaths and prayers helps me. I prayer for the strength of 10 men and patience.
We are Christians and believe in the Holy Bible. I started to inscribe "We have all eternity"
Dad always says death is not the end, it's the beginning of our eternity. Keep the faith.
Jesus showed us on the cross and conquered death with many many many who witnessed him raising from death and a accending to heaven. You have to want to seek his peace on your own.
I just wanted to share what gives me peace and hope.
Prayers for you and your Mother.
I felt ambiguous grief when my mom was alive. She just wasn't the person I remembered. I could love and take care of the new person she was, but I missed the person she used to be. I understood what was happening, and dealt with it ok, but oddly enough, once my mom passed away, I got angry when people acted like I was suddenly grieving. I feel like I grieved for my mom two years before she died.
Anyway, it does help to find other roles in your life. You just lost your role as a working person. Can you find a role volunteering somewhere? Spend more time with other family members or other friends? Take on a part time job doing something you always wanted to do? Start a hobby?
Thankfully, I believe in eternal life and my mom was a woman of strong faith in Jesus, so I know I'll see the REAL her again in heaven.
You would do well to proof read your posts before posting them.
This way you won't have to edit them later or rewrite the entire thing like you've done here.
You could do things with her like coloring, working on a big print puzzle, play cards, listen to music, look at pictures, watch a movie, ect.
Read a book to her.
GIve her a foot massage, Polish her nails.
Doing things, you wouldn't have to think of things to talk about.
Install Nest Cameras in the rooms she's in mostly and then tune in using your cell phone or lap too to see how her day is and you'll have more to talk about.
My 97 yr old Dadwiyh dementia, lives in his own home with 24 7 Caregivers.
I had my son install Nest Cameras which was pretty easy and it gives me peace of mind to be able to tune in any time day or night to see how things are going and how he's being cared for.
Consider that the scope of your mom's world has gotten a bit smaller. Her home and maybe the neighborhood is now her world. I would suggest focusing on those topics: weather (yes), meals, movies on television (even if they are really old ones), what is growing/blooming in the yard...
Consider expanding her world and yours but introducing fun elements throughout the week. I suggest you expand your world in new hobbies, maybe volunteer work, travel a bit, meet with friends or groups where you can make some new friends.. Expand your mom's world by sending your mom flowers or treats during the week, take her on short trips, try new foods together...
Dr. Kubler-Ross suggests that there are 5 stages of loss.
Stage 1 - Denial - the shock that occurs when there is a major or sudden unpleasant change.
Stage 2 - Anger - the indignation that this change or loss has occurred and feeling that it isn't fair.
Stage 3 - Bargaining - all the efforts to try to bring back what was the usual before the loss or change. These efforts do not work.
Stage 4 - Depression - the sadness and mourning that occurs when a person realizes that the loss or change is not reversible.
Stage 5 - Acceptance - finding peace and adapting to the loss or change.
I think you are in stage 4 - depression. It may be worth seeing a counsellor to help you navigate this stage so you can get to stage 5 (acceptance).
I am on Prozac and it has helped me during this time, I agree with the other comments, a therapist would be a good idea if this feeling carries on. I focus on the present, as it is too scary for me to think about when she is gone. I know logically it is inevitable, but emotionally, I can not bring myself to think about it. So I put it in a compartment in my brain, and carry on. I wish mom would stop thanking me for being there, because it feels like a goodbye to me. I just say, "you are my mom, and I love you".... I see I have talked more about my situation than giving you a solution; in short, I will always wish that I had done more or I asked more questions. Be kind to yourself, and yes find something you love to do and create a community in that circle. Retirement can be a grieving time as well. Your mom will be happy to see that you are happy outside the parameters that you two share. Sometimes I make up crazy stuff to discuss with mom, a little gossip or something inappropriate. Everyone is so nice to little old ladies, mom likes a little spice in the conversations.... so I give her some hot salsa.... lol
I posted early on. Just checking on you. As you can see by the postings, lots of people can relate and care very much. Caregiving is challenging.
I hope that you are feeling a bit better. Take care. Sending many hugs your way.