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??
Grief comes in waves, you are realizing the days slip by to a day you won't have the same talks, but don't dwell on it as the focus. Journal and read or do counseling on grif, but also find some hobby to give your day a reason to wake up.
Best Wishes
My mom was my best friend too. The time we had together was golden.
She may be in her nineties, but she is so important to you, at any age. Don’t feel guilty for feeling sad and concerned.
A friend greatly helped me when I was going through what you’re experiencing, by telling me the following. You are grieving, but you still have her. You will have some days that are absolutely wonderful and others that are incredibly painful. Cherish the wonderful days. Generally expect the worst, and with these managed expectations, you may feel a little less pain.
Some people die abruptly, but she is still with you, giving you more love and memories. She is probably staying alive for you—she doesn’t want to leave you, because your relationship is so meaningful. She also doesn’t want to hurt you.
On your non-caretaking days, create lists of things you want to do with her, to best enjoy your time together. Not all these activities will work out and when they don’t, pivot and do something else from your list. Enjoy who she is at every stage. Try not to panic. Make her feel comfortable and loved if she makes a mistake and she won’t be afraid to keep trying.
Note the breakthroughs. Was she more herself after a creative activity? Did music seem to reach her more? Did she seem younger after a walk or fresh air? Was her memory stronger when we were resting and talking? Look for cause/effect and see if you can help design more good days.
As for the phone calls, keep them coming. They could be an emotional lifeline for her, even if the conversations are not as spirited as they once were. In the meantime keep on your toes thinking about other causes, just in case that could help. Could she need a hearing aid/update? Upgrading her phone for an adapted (hearing-impaired) version may help too.
if her mental state has changed dramatically, look at her medications (read the printouts from the pharmacy). Does she take anything that has a side effect of confusion? Is she prescribed something that may interact with something else? Sometimes these creep up slowly as the cumulative effect in her body occurs. Lots of elderly are over-medicated and the doctors don’t always know what the best combinations are until a problem occurs. Don’t be stifled if your mom’s doctor responds that you are in denial of the aging process. Sometimes doctors feel criticized when questions are asked, but you are both on the same team. Leave no stone unturned. Never remove any medications without medical direction.
The second suggestion is for you to find something to do like join a seniors group.
Yes it is very hard to be in your situation, I have been there a few times.
I don't think the conversations need to be long, keep them short with a good story and something that will make her laugh, just calling her everyday is the important part. Go for quality over quantity.
Counselling is always great idea for anyone. That way you can focus on enjoying your time with your mum instead of being saddened by it but also focus on building up your own life
And to (some of) the people of the forums, lets keep this a safe place where we don't judge others struggles as being less worthy of attention than our own.
Nobody can fix dementia. Nobody can fix the broken mind of the person suffering from it or the daily turmoil the 'child' has to suffer when calling the parent to talk on the phone. Or driving over to see them. It gives me a stomach ache every single time. It's rare that we're able to have a pleasant conversation, or a real conversation of any kind, or a nice visit. It's always strewn with a lot of cussing (on her part) and name calling and general angst/agitation/complaining about everything from the food to the other residents who live with her in the Memory Care ALF. She often hangs up on me, too. The whole thing is nerve wracking.
If others want to tell you it's 'shallow' or 'selfish' of you to feel depressed or upset with this situation, that's flat out wrong in my opinion. We're all entitled to feel whatever emotions we FEEL. We've lost, or are losing, our mothers to an ugly disease that makes them impossible to talk to; to interact with; to deal with in general. The argumentativeness is beyond belief; just that alone is enough to make any attempt at 'conversation' impossible, at least in my case.
Feel however you need to feel. Get it off your chest. Come here to vent & to get support in general, from most people who understand and empathize with you. Take what you like & leave the rest, as it is with the entirety of the internet.
Get counseling if you think it will help you, by all means. I just don't like that answer as a 'be all and end all' across the board remedy to everything. Sometimes I just want to vent and be heard, that's all. Or punch a pillow and scream. I want my daughter to say Gee mom, I hear you.........I know how tough grandma can be and what a horror show it is to go over there & have her treat you like dirt. Not "Will you please go get counseling, geeez mom." You know?
Wishing you the best of luck with a very difficult situation. You have my understanding and support, and here's a hug for you too.
I have noticed that some people use suggesting ‘counseling’ as an easy way out for them. They aren’t interested in listening to the other person speak about it anymore. Other times, counseling is suggested from a place of true concern, which is great.
There are generational differences too. I have two daughters. I absolutely know that we won’t see eye to eye on everything. That’s a given, right? Just like we didn’t agree with everything our mom said.
Anyway, great posting!
Sometimes it is nice to enjoy the quiet. No conversation - just sitting on the porch at sunset, humming a song listening to the birds, you can watch and imprint on your brain each wonderful line of your best friend's face. Sometimes we would hold hands. Yes.... I should have been in the house cleaning or thinking of tomorrow's dinner after work but ...... the setting and and the time was so tranquil and peaceful for both of us. I remember we smiled at each other and held hands for a while. It's one of the great memories I have of my Mom now.
As some else just said......... life changes. You can't control the change but you can control you're reaction to it.
I think seeing a counselor is a good idea. Sometimes we get so focused on our careers and workspace, we forget to develop other interests. So think about what you might like to venture into as a hobby..... drawing, painting, music (the largest group of people learning to play piano in the US today are over 65), photography (digital photography is a wonderful outlet and some of the editing packages can make you another Ansel Adams in a year or so! - ok ...not really but you get my meaning..... it's fun, it's creative, it gives you something to talk about and you meet new people). I met a great group of people five years ago when I signed up for a photo shoot course at Gettysburg by sunset. I had the cheapest camera and was clueless about ISOs and F stops but they had a blast teaching me. We still are in contact today (and my photos have gotten better); Sports ?........... golf, horse back riding (yeah there are a bunch of us old ladies riding in our 70s; Gardening...... the monarch butterflies need your help . Yes, you may have to force yourself into some of these thing but think about.... your Mom.... your bbf.... will never consider you boring and wants you to live your life to the fullest. Start now while she can enjoy watching you soar.
Wishing you peace in this journey. Please stay in touch.
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.
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
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).
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.
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.
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.
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.
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!
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!!
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!!!
Thanks so much for your reply! I appreciate it!!!
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!