It's almost 4 years since my mother passed from vascular dementia aged 106 on a cold afternoon in December. It was a great relief for me, and, I think, for her. She was ready to go and I last saw her with a small smile on her face. I had been caregiving in one sense or another most of my life due to my mother's mental illness - Borderline Personality Disorder and narcissism.
I find I am grieving a bit this year, probably because I am moving from my family home of the last 40+ years as well as remembering the years and years of difficult family relationships and very stressful caregiving. No more "crazy" phone calls, demanding emails, subtle and not so subtle put downs, rantings and ravings about my shortcomings. I know many of you get it.
My father died many years ago and that marked the end of any caring nuclear family. He was a nurturer. My mother died nearly 4 years ago. and once the estate was settled I cut contact with my sister. I recall very few kind words from my mother or my sister - ever. My sister smiled then stabbed me with a sharp remark. "What did you ever do to help mother!" This after several years of me being POA financial and medical, moving mother a number of times, dealing with problems at the facilities she was in and her progressing dementia. During one visit my sister made to a new facility she asked me if I had seen mother's room. I said, "Yes, who do you think moved the furniture and set it up?" She just looked blank. Never a thank you for what I did.
In some ways the slate has been wiped clean, although the traces of the past are still with me. I have worked hard to overcome and heal from the hurts, the dysfunctional ways of coping, the anxiety. The past is fading, slowly, but it is fading.
Can we really start again?
You did a miraculous job and made life better for many people, even if they don't recognize or acknowledge it.
Start with doing things you enjoy just because you enjoy them!
Wishing you the best.
so many of us helping our elderly LOs, are under-appreciated.
i’ve copied your words into my notebook:
“You did a miraculous job and made life better for many people, even if they don't recognize or acknowledge it.
Start with doing things you enjoy just because you enjoy them!”
Try to get professional help in some capacity to assist you further with the arduous process of healing.
Check out what grief support groups are in your area. Grief extends it's grip for a very long time in many situations. It doesn't matter how long ago the actual death was.
Perhaps even grief support 1:1 counseling or an appropriate grief support group will be one place to continue your healing.
Or seek other licensed support help.
Perhaps inquire with the county health department in your area for what they offer and, of course confer with your primary care physician for referrals.
Seek faith based qualified clergy support if you practice a faith. If you do not, a hospital or community based chaplain should be a good support.
The holidays always bring exacerbated wounds .
Be kind to yourself .
You do well to stay away from toxic people and environment ( as you have noted).
An example was given about stresses we carry, and things that burden us and weigh us down, like, not fully forgiving. We can liken this to caring a backpack . Our problems in life are like carrying a backpack, it can be a lite backpack or can be a heavy backpack. Think about if you carried a backpack full of rocks, it is heavy, it weighs you down. Our stresses weigh us down. But if we take out those heavy rocks, one at a time, it gets lighter to carry, right. That’s when we forgive and forget, not bringing those memories back to our minds, letting them go. Forgiving doesn’t minimums the wrong done, but you are letting it go. Not thinking about it, not picking up and carrying it again, but let it go. That’s really forgiving.
These thoughts really helped me, I hope this example helps you.
I lived with my mother in her home and took over all the household repair and maintenace duties. After living with with her for 48 years, as executor I had to sell our home to pay all the expenses of probate as well as her debts.
She suffered from paranoia and although she someday planned to put my name and my sister's name on the deed never got around to it.
My only sibling was not much help even though a retired nurse. She lived out of state and had her career as well as raising her children. I understood she was always busy living her own life. Now 2 years after my mother's death my sister has arrived at the conclusion I have always been jealous of her and I am a hypocrite. She cut ties with me in January. I am leaving it that way. Now in my mid 70's I finally realized we never had a good sister relationship ever. I was viewed as always the one who is wrong. I always apologized for being the wrong one (my sister's judgement) just to keep communication lines open between us. It hasn't been easy. In 2014 I started having anxiety and panic attacks. I still have both but am learning to cope with them. I believe they started as a result of the stress of caregiving.
I managed to find a small home to replace my mother's home as my very own residence. I have good days. I have bad days. My only advice to you and other post cargiving caregivers is to realize you did the best you could at the time and to leave the criticism of others in the past. I treasure my memories of caregiving my mother. Even the sad and bad ones. Trading roles with her, becoming her caregiver was a priveledge and not even my sister can ruin that for me. Perhaps it was my that was jealous she did not have that opportunity and is now having regrets. Bless you for caring for your loved one and may you find comfort that you did the best you could in a very difficult role. Now take time to rest and enjoy being you!
Oh yes, exactly!!! To my mother and my sister I was always the one who was wrong. I understand so well. It took me about into my 60s before I really got that we never had a good relationship. I am glad you found a place for yourself and have good memories of your time with your mother. I hope you have more and more good days and less bad ones. These changes are difficult.
Since it’s been four yrs, and some hurt has faded, but you sound like you still are in pain, I would recommend counseling for yourself. It can do a world of good to have an unbiased third party to vent to. It sounds like the issues you’ve had go back much further than your moms dementia.
Traces of the past will always be with you. Now it’s about how you deal with those memories. Do you let them interfere with moving forward or can you use those memories for something positive? That positive would be you CAN move forward, in spite of everything that’s happened. Think of how strong you are and how much you’ve overcome!
Moving is hard, especially after 40 yrs! Get excited about the new possibilities ahead of you. The adventure of a new home. A new neighborhood. Setting up your own place, with your own things. Surrounding yourself with things that make you happy. Get to know neighbors. Make new friends. Do the things that give you joy…gardening, reading, music, a pet, exercise, watch TV, listen to podcasts, nature. Relax and enjoy your morning coffee, a leisurely lunch etc.
You can begin again, counseling will help. Be good to yourself. Don’t dwell on the past. You have fulfilled your obligation. Good luck!
Choose to spend your life with positive, upbeat people who make you feel happy.
Grieving doesn’t ever completely end. When you are hurting most, consider volunteering to help others. That has helped me heal.
The (not so) bad news: It will take some time for normalcy to creep back into your life.
My wife and I lost both our mothers last year. We were married to the phone. Her mom passed from renal failure at 91. My mom died of Dementia at 86. That last year was HELL. Even though my mom was in assisted living we still got phone calls every day from the facility, from her, non-stop, it felt like. Her mom never entered a facility but was on home care. My wife and her sister had to learn to use the dialysis machine so they could tag-team swapping out tubes, cleaning her, sterilizing the equipment....
At first we were happy to help, but as time wore on, it was tearing us apart. I saw sides of myself, and my wife that I never knew existed.
But we did it. We survived. That was last May. We're still filling in the gaps but we've been on a few road trips just to put some distance between what was, and what will be. We're not so afraid of the phone anymore and life is getting back to normal.
It will happen for you, too. TIme heals all, but more importantly, it's what you do with that time.
Take it from me (I moved out of state to get away from physical reminders), but I could never erase the painful memories. I have learned to compartmentalize each big issue and have sorted them into boxes that I keep on a shelf; they are available anytime I need to revisit my pain. Depression has reared its ugly head, but it is something I know can paralyze a person if not addressed, so I exercise and meditate everyday to maintain some sense of balance.
So yes, you can get past this if you don't stop moving.
I am going to visit my mother maybe next spring and now I can honestly say I am not that scared little girl, or afraid young woman who took all the criticism.
I can look somewhat at my mother with compassion and empathy, thinking how she did not allow herself to be happy and how I as I was free spirited always did not allow her to repress me, as she did repress my sister. I realize I will never understand my sister, I am lucky to have BFF, who is similar as me and her sister so different, we are closer for over 30 years than real sisters.
I highly recommend her books and listen to her amazing TED talk that made her famous.
Casandra Brené Brown is an American professor, lecturer, author, and podcast host. Brown is known in particular for her research on shame, vulnerability, and leadership, and for her widely viewed TEDx talk in 2010.
Be kind to yourself. Healing takes the time it takes.
Are you doing anything pleasant / pleasurable for yourself - on a regular basis? One tool I used (for other reasons) was when a thought popped into my head, I had a rubber band on my wrist and would snap it. This might sound like I'm inflicting self-pain or something although the point is to interrupt the 'mind going where it goes' and learning to discipline it to redirect it elsewhere. The elsewhere could be a list you create for when these unpleasant / sad / painful feelings come up 'over and over again' and you want to shift out of them.
Along with this learned shifting, you will want to also process through them vs numbing them out or hiding / covering them up. So... I am not saying to cover them up. Acknowledge "Oh, I am thinking about ... and feel ... " and then replace the thought(s) with another 'present time' thought (based on the list you create).
Gena / Touch Matters
Perhaps you should seek out a support group to try to move on. From where I sit, I’m envious that you’re done. I have two 94 y/os to deal with and the thought that they could possibly live to 106 horrifies me.
As I've explored my future options, I am thinking that one of those CCRCs that go from apartment living all the way to nursing home might be the way I want to go when my next chapter begins. (I know I will not require of my children what our parents expected of us.) My goodness -- so many activities at these places. Never a dull moment if you don't want dull moments. So much social life!
I haven’t been here in quite a while but some of the forum veterans here will remember my experiences with two very stubborn out of state elderly parents. I was the only surviving kid (now 68) and was completely on my own with the whole mess and it was indeed a slow motion train wreck that took about 6 years.
after mom and dad were gone I was haunted for months by the experience. Couldn’t turn it off, had nightmares every night about my folks, had trouble sleeping and had developed AFib.
The AFib is controlled now and I’m sleeping better. THC gummies are a blessing. We have no kids, only some distant nieces and nephews. They won’t be hands on caregivers, and I would never ask that of them but I can trust a couple of them to see that we are looked after when we start circling the drain.
We will be well prepared for someone to take over with POAs, wills, end of life instructions and so on. And hopefully there will be enough money to see us to the end. By the time my folks needed help neither of them had any executive reasoning left. It was a nightmare getting things in order and trying to keep them safe.
This is a good discussion. Thanks to Golden for this thread and for her wise counsel on this forum not long ago when I was up the creek with no paddle. I still see many of the folks here that were a great help to me back then. My best wishes and happy thanksgiving to all of you.
Some personal thoughts: I believe 100% that this is a type of C-PTSD. It doesn't go away, and we live with it.
Yes, we heal slowly. But it's there. Or maybe I'm still too much in the throes. This year has been so strange for me. My perspective may be skewed.
You're going through a big change in your life with this move. I think you nailed the trigger, but it's also not as if complex grief needs a distinct trigger to rear up. I think it is always under the surface. You are amazing. It's more than ok to feel the grief, and get it out as much as possible, and tomorrow is a new day. I get that you have to walk through it, feel it and vent it, and start tomorrow anew with a little less of a heart burden.
I'm reading about myelinated neural pathways lately. It's basically the habits of our brains. I think old grief is a well-known pathway. It will always come up, uninvited, unexpectedly. And then we kick that b*tch out again and again. :) I love you so much. You are my personal hero, dear. ((((((hugs)))))
I took care of my dad all his life my 4 siblings disowned him.
He passed away in 2017 after years of alcohol abuse and dementia
My family took their money 20k each and ran. And haven't spoken to me since. They didn't agree with the natural funeral I had for him.
So effectively I feel intense grief for dad's death but also I am grieving for the living...
I haven't had any comfort, phonecalls nothing, and I am a carer for a gent who has advanced Parkinson's
I am empty and numb.
I have felt I didn't want to carry on
Can we start again..yes but we need support from as many caring hearts as we can find. I am one of those, and here for you. Vicky x
I have been coming to terms with it all and now am working at understanding the genetic/environmental influences that determined sis's ways of dealing with the world. For me that is the route to forgiveness and healing.
To fill in my background, I very much had my own life - 2 degrees, good jobs, 2 marriages, 4 children, and I have engaged counselors off and on all my adult life. I was the one mother turned to for help throughout her life though she coped very well with most things on her own until she got dementia. But she was always very critical towards and angry at me. My sister was the one she had fun with. Throughout the latter 20 years of caregiving, for my survival, I remained at a distance from mother, travelling to meetings with doctors, to visit her, to see that she got the best possible care I could arrange. I worked (college instructor) until I was 73 and mother had begun to show the symptoms of vascular dementia. The travelling combined with the work became too much for me at that point. I had developed Chronic Fatigue Syndrome and Fibromyalgia when I was in my late 50s.
Nonetheless, I continued to develop my own life apart from caregiving. Around the time that mother became ill, having been single for about 20 years. I started seeing someone, who turned out to be an enormous help to me with mother. She moved, I think it was, 5 times in 8 years due to dissatisfaction with her facility or increasing needs. R attended meetings with me, and physically moved the furniture and helped me set up the new places and looked after the dump or donate aspect of moving, His help was invaluable to me.
Since mother passed I have purchased a condo further south and am downsizing in prep for selling this house. R is already there as he moved south with work a few years ago. We went through hard times recently with my dd's breast cancer diagnosis and the loss of my ex who had become a friend and the passing of another very good long time friend. However dd and I are closer than ever and the grands are growing up nicely. It looks like most of us will be in or near Edmonton within the next few years which will give opportunities for family get togethers that we all are looking forward to. I have a lovely part Maine Coon kitty, who is a great companion.
So - yes, I have counselling, yes, I have my own life, yes I have joy in my life. However all those things do not erase the pain of childhood abuse though they certainly improve my QOL. Dealing with the hurts from my sister is my last task, I think, in terms of my family of origin issues. Again, thank you all for sharing your own stories and perspectives on mine. I hope in some small way this exchange has helped some of you.
Blessings to all.
I've made mine too, but wonder if the pain of self-doubt can ever be assuaged, a legacy from a mom who shamed, belittled and undermined at every opportunity. It takes tremendous strength of will to overcome. Later on a borderline husband took the the best years of my life. So many years of dancing on eggshells developed negative traits that are hard to shake off; people-pleasing, anxiety and trust issues among them.
I'm still caring for mom, but she's so far advanced into her dementia, her true character has emerged and the narcissistic traits are gone. I can't imagine how my life will change when she passes.
Thanks again for sharing your story.
It’s been awhile since I posted here.
I can totally relate to how you feel.
Have you ever felt like you were living in a Twilight Zone episode or a crazy sci fi time travel movie where you were caught in a time warp? I certainly have felt this way.
I do appreciate sci fi but only as entertainment. I think after our many years of caregiving we deserve to relax. We earned it.
I needed time for myself and wanted absolutely no reminders whatsoever related to caregiving. So, I didn’t read or post on AgingCare.
For awhile I struggled with memories. It’s difficult to transition into a new life without experiencing some repercussions after caregiving for so long.
For what it’s worth, in my mind I have always designated you as the ‘Queen’ of caregiving!
My mom lived to be 95. Your mom lived to be 106! Wow! You were the one with all of the experience and knowledge.
When my mom turned 90, I remember teasing her saying that I was going to place 90 candles on her cake. She said, “Don’t you dare. I don’t have enough air in me to blow that many candles out!” I bought a nine candle and a zero candle. She was happy with that.
Mom didn’t wish to live as long as she had. I certainly don’t blame her. Who wants to suffer endlessly? Or feel like a burden to others? It was hard for her and hard for us.
Sibling nightmares! Many of us have been there. I am grateful that somehow our family was able to move past all of the confusion and conflicts.
In some cases I wouldn’t even try to reach middle ground, let alone consider a reconciliation. Unfortunately, this is a sad reality for many. Yet, moving forward is still possible.
I too had a wonderful father. He was also a nurturer like your dad. I giggle when I catch myself telling my children some of the same things that he told me.
This is indeed a very Interesting question that you have posted, Golden. I think the answer depends entirely upon each of us and according to our own individual circumstances.
We do start over if we aren’t trapped in a time warp. You certainly aren’t trapped.
You have inspired me so many times. I thank you for all of your support, wisdom and compassion that you have given to all of us.
I wish you the very best as you continue on your journey. I know that you will continue to inspire us.
Agreed, we deserve to relax after the years of caregiving. There is no doubt about that. Sometimes it is not easy to transition into a new normal. I completely understand that you needed to separate yourself from caregiving. Memories can be a b*tch.
Queen of caregiving? Thank you. I would have designated someone like yourself who had so many years of hands on caregiving. I remember when you first came on AC and talked about your years of caregiving your mum in your own home. I thought, "How does she do it?"
Longevity is not necessarily a gift and it can be hard on everyone. Family are fractured, and, as you say, some heal back together and some don't. Life goes on. I am not trapped. I guess I refuse to be. We all have choices. We all continue in one form or another. Why not make the best of it? I'm not saying it's easy. Often it isn't and takes honesty with self and others, and a lot of heavy mental and emotional work. Facing yourself can be hard.
You are right, it is individual. We each have our ways, our tendencies, our mental and emotional make ups, our life experiences. Comparison between people are not always helpful. Comparison with our old self can be.
Dear one, you have showered this old woman with some very kind words. I do appreciate them and that you have come out of the safety of your long absence to share. I wish only for each of us the blessings that God has in store for us. He has a plan for us and it is good, In the more difficult times I remind myself of that. (((((Hugs))))) again, Need, and welcome back.
You know my history. Mom passed just over five years ago, she was moved to a facility just over seven years ago. I am still trying to figure out my direction. Eventually, it will come. My life and location has been completely fluid for the last seven years, never really know where I will be tomorrow.
You have so many memories, good and bad where you are; I understand how difficult this move will be for you. Do you think that you may experience a sense of relief as well? Kind of like when your mom passed, this chapter is finally over and time to start anew. Look forward to that relief feeling, contentment, satisfaction, comfort and so many new good feelings will go along with it.
You have so much to look forward to with this move. Concentrate on those good feelings that will come and will certainly be a huge change for you.
Best wishes on that move and that it happens with the least amount of strife as possible.
People say, "How did you do it?"
I reply, "What choice did I have?"
We do have choices. They aren't always easy, but we do have them.
Thanks for affirming that it is OK to slow down. I am, though not by choice entirely. The CFS has slowed me down the past while and probably will again. Winters aren't my best time. I had hoped to move last summer but so many things slowed me down like weeks without water and sewer. It's going to happen - just taking longer and more money than I planned on, but that's OK. More time is giving me the opportunity to reflect.
You have bounced around a lot since you finished caregiving. I know you want to settle nearer your kids, which means that your house has to be sold first. It's taking a long time isn't it? That must be frustrating. Would working more with your mom's fabrics be a direction for you to go? You could do that from anywhere.
I am getting more and more to the point where I just want this to be over. I want to be settled and not dealing with downsizing, and prep for sale any more. I want to be in my new (to me) smaller condo and have less to deal with. It seems like an almost impossible dream right now. R has only finished with the farm very recently and then his car was stolen while his big truck was in the garage - so no transportation for a while. Oh well!
There will be a predominance of great relief, I think, mixed in with other emotions when I finally leave here. It's time. I do have much to look forward to and am so very thankful for that. At my age everyday that I am functional is a gift and I try to remember that.
Wishing you well for your future too. It will unravel.
“The best laid schemes o' Mice an' Men, / Gang aft agley,” (The best-laid plans of mice and men often go awry.) - Robert Burns
1. forgive ourselves and others. Forgiving others is self-healing. It does't matter if the other person is still alive, gains benefit from our forgiveness - in terms of how you feel about doing this; it is a process of letting go for your own benefit, healing, growth. Is it the ultimate self-care, self-less care (selfish in my vocabulary).
Some people need to learn the difference.
- Forgiveness does mean setting limits / boundaries on what we will and will not do based on our past interactions, be it parents or friends.
2. We need to learn or re-learn to love our self /ourselves UNCONDITIONALLY, accepting who and how we are while doing the best we can to 'support our essence, foundation of self / self-esteem' with positive reinforcement and NO JUDGMENTS. Self reprimanding / judgments / criticisms, and guilt DO NOT SUPPORT US to be the optimal 'best self' we can be - so toss these thoughts out as soon as you feel them.
3. Do a list of 10 positives ... or two lists:
First list: list 10 positives a day you do for yourself. One could be getting out of bed and/or taking a shower. Yes, I was there decades ago. Any / every little thought or behavior I did counted. What did this do? It helped me turn my thoughts / brain from focusing on what I was not doing 'right' to what I am doing - and helped me pull out of the depressive state / lack of self-esteem / confidence I wanted.
Second List; What you want to do that you are not doing. Make this list 'win - wins.' Make it easy "walk to the mail box ..." ... Make myself a cup of tea (or coffee). The key is to get yourself moving in the direction you want to go by self-encouragement. And small steps are always better as you make them 'doable' - and perhaps you might even try doing something new 'on your list.' !
And, know that both lists can be updated / changes at any time. If something on the list doesn't work or feel right, change it. You want to create 'win-wins' - not self-defeating / 'jump at the self-criticism any change I get.'
I find that stressors - and the kind that are ongoing (i.e., caring for a loved one... being the POA / legal responsibilities, dealing with the process of nearing the end and grieving in 'slow motion' all contribute to me needing to be more self-loving not less. It is not easy... it is a discipline (I can do sometimes and don't do other times). . I've been at this self care for close to / around 50 years. And, I am dealing with new stressors and not doing as well as I'd like... although I never reprimand myself. I know I do the best I can in any given moment ... even if it ISN'T the best I want to be able to do. Self compassion, self love, self respect. This is how we change. By accepting where we are with visions of or aspiring to where we want to be / go ... a step at a time.
Gena / Touch Matters
changes - decisions that protect you - your mental and physical health will continue to deteriorate. You are burned out now as it is and need a lot of self care to recover.
Your husband is being looked after by professionals. You can lay right back and let them do their job. You are not obliged to continue this madness.
My advice is to put yourself and your health first. Stop doing anything that is getting in the way of you regaining your energy and peace of mind. Whether he likes it or not is immaterial. You are breaking down so drastic measures are necessary.
That means -
1) Stop visiting him as often. These visits are hard on you. I suspect right now any contact with him is hard on you. You are allowed to take a break - as long a break as you need from visiting him until such time as you can visit without it negatively affecting you. If that means weeks or months, so be it.
2) Stop taking the endless calls from your husband. They are not benefitting him or you. Let them go to voice mail or block his number for a while. That's what I did with mother. I trusted that the facility would call me if anything happened to her,
3) Do NOT bring him home -I repeat do NOT bring him home. You cannot care for him at home. This is not about what a man with a broken brain wants, this is about what he needs and what you need.
4) You do not have to keep trying to please him. The time comes when looking at needs has to be the focus, not looking at wants. Your needs and his needs are not necessarily in opposition.
5) Get whatever medical/counselling care you can to improve your mental and physical health. Alanon doesn't cost. I see you are Canadian so whatever health care you need is affordable. You should be able to find some counselling that is affordable too. Get help with the FOG.
6) Enjoy your vacation and make it a complete break from your husband and caregiving. No phone calls, no contact of any kind! I am sure your sons can look after anything that comes up.
That's a start that will put you on a path to better physical and mental health. It won't necessarily be easy to make these changes but it is possible, It would probably be best to have a counsellor help you through this, but by all means come back here and share your journey towards healing, Lots of people will support you. Wishing you all the best.
Many of us (including myself) are living it right now and have the same question - what will life be like when it’s over? I expect that it will not go back to what it was before. Becoming a caretaker is not a role most of us expected or were ready for - but we did it or are doing it because somebody has to (or wants to). Maybe there will be a huge sense of relief. Maybe the new free time will feel freeing or weirdly empty. Maybe we’ll feel happiness for our loved one who is not suffering or happiness for ourselves that we are free from an overwhelming responsibility and full time job. Maybe we’ll have PTSD. Don’t know. That will be another stage of this whole experience. Maybe those who are at that stage have words of wisdom.
I remember you telling us wonderful stories about your sweet kitty. I’m sorry, I can’t remember his name. How is he doing?
My cat went through so much with me. So did my dogs. They are such a comfort to us throughout our lives. We miss them terribly after they die.
I don’t have any pets now. I can’t take the heartbreak of losing another animal. So now I enjoy being with other dogs and cats that aren’t a full time responsibility for me.