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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?

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I am going to have a life after caregiving. I owe it to myself and my husband and son. Our lives were almost stolen from us.
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golden23 Dec 2022
I am glad to hear that and totally agree that you owe it to yourself, your hub and your son. It sure feels like something valuable has been taken from us. It's a really hard road. Be good to you.
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I can totally understand how your move has set you on a path of reflecting, and I can relate to so much of what you said. My mom turns 90 in two days. Caring for her, and dealing with her dementia the past 4 years has been so hard. I know she had some mental health issues too. For me, it's a lot harder to forget when the issue was never resolved.
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golden23 Dec 2022
Thank you for understanding. I appreciate it.
Oh, gosh. "the issue was never resolved" The story of my life! When mental illness is present many things never get resolved in the normal ways. I developed a one-sided resolution (me, myself and I and sometimes a therapist) which made me more comfortable. I don't think I have actually forgotten many of the facts of what has happened in my life, but the sting has gone from most of what my mother did. I don't dwell on it and I can recall the (few by comparison) good things.
Caregiving for a LO who has mental health issues as well as dementia is extremely challenging. There is no question about that. As I have mentioned, for my emotional survival I distanced myself both physically and emotionally from my mother and sister. I could not have possibly done hands on caregiving and I let mother know that from when she first brought up her possible future needs.
Yes, it is harder to forget or get over the emotions when there is no resolution, and harder to forgive I think. ((((((Hugs))))) to you for looking after your mother. Please be sure to take time for yourself as much as you can and to include good things in your life.
The other day I was recalling the "bad summer" I went through with mother and sister - it was way worse than usual - and I also recalled that I had fun that summer. Not that that period of time was fun, certainly not, it was a nightmare, but during the nightmare I had some enjoyable activities which lifted me up and gave me some good experiences and memories and kept me sane. I went to parties, I hiked with a girlfriend, a young man took me to a show in London, I boated on the river Cam with another girlfriend, I studied a course I was having trouble with and passed! It is possible to have some good times during the very difficult times and I think we owe it to ourselves to give ourselves as many good times as we can. It helps us to survive.
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Need - I had 2 female medium hair orange part Maine Coon kitties from the farm -Pumpkin and Rocky. Pumpkin disappeared over a year ago and now I just have Rocky. She is a sweet thing and part of my starting anew. I hadn't planned on getting another pet at my age, but R really encouraged me and I couldn't resist when I saw the kitties on the farm. She is little trouble. and a lovely companion.
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NeedHelpWithMom Nov 2022
It’s awful when a beloved pet disappears. I’m sorry that Pumpkin went missing.

I bet Rocky missed Pumpkin too. Did they form a bond with each other?
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Golden,

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.
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I think you are right - many of us “get it”.
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.
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golden23 Nov 2022
For me there was a great sense of relief, part of that due to my mother's mental illness and the effect it had on my life. Also I was hugely thankful that my mother was released from her illnesses. I think the feelings will range depending on the relationship between the caregiver and the one being cared for and also, the length of the caregiving and so on. I think we all face a new normal and, for some, perhaps some challenges related to filling the void of caregiving. In my case it has been freeing. All the best to you as you continue your journey,
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Yes! Make time to develop relationships with people who are loving and kind to you.
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golden23 Nov 2022
Absolutely!!!
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I can’t tell all of you how much I appreciate your wisdom & experience. I feel like I’m stuck in nightmare I’m trying to escape from but it’s so complicated. I’m 74, husband 76. He’s an alcoholic, has caused huge problems for our family. He was told by neurologist 3 1/2 yeas ago had Mild Cognitive Impairment but he refused to attend follow up so no further diagnosis. I have been taking care of him over past 3 1/2 years, during which he has done nothing, would only walk to get to bathroom, sat all day staring out the window, no longer read anything, could not follow tv program unless v simple, easily confused, angry, huge urinary incontinence every night, was v demanding - “I’m ready for my coffee now” then as soon as I sat down he wanted his second cup. He refused to go outside unless absolutely necessary, would not ever sit on patio in sun with me. He has Severe Hydrocephalus, COPD, trouble walking, urinary incontinence, mild heart condition. Was admitted to Hosp last summer after fall & slight medical concern. Doctor did not want to admit him because hospital overloaded but after 2 days in Emerg, exhibiting v bizarre behaviour, eg, trying to give a urine sample out in the open with people walking by, they decided to admit him. Previous to hospital I could not get any diagnosis although I knew he had dementia which is part of severe hydrocephalus. Had nightmare assessment by incompetent geriatrician last Dec, saw husband 10 minutes then told me he did not have dementia because he knew there were major floods happening in our province!! In hospital this past summer he was labelled physically and verbally combative patient, purple warning sign on door. He was sectioned under Mental Health Act as he was trying to leave which was deemed unsafe for me & him, legally he could not leave. Hospital geriatric psychiatrist diagnosed dementia through PET scan - possibly Korsakoffs and she decided he could no longer be cared for at home without 24/7 nursing care. He has been in Care Home 2 months. Still has purple sign. I thought nightmare would end, life would be easier but it’s not- now I’m totally exhausted, have trouble getting out of bed, no energy can barely do anything. I sometimes consider suicide but couldn’t do that to my 2 sons and 3 lovely young grandchildren who I’m very close to. They are my life savers. My 2 sons supportive, help as much as they can. My Dr said I’m depressed, doubled my anti-depressant which has helped a bit. Husband is cognitively aware enough to be very unhappy in Care Home and aware that he is much younger than average resident. I visit every 2nd day with two separate 7 days off due to severe stress from him. He calls me every day, cries, begs me to take him home. He’s beginning to wear me down. He shadows me by phone, has to know where I am- paranoia. I know if I bring him home it will kill me, even with help. Past 3 1/2 years I did everything at home knowing it would keep me active, which it did until I had a bad fall 1 1/2 years ago- compression fracture in spine & badly broken wrist requiring surgery- plates & pins. Husband totally fell apart after that because he thought I was his saviour. We had home help for a while-I could barely move- excruciating back pain first 2 months, lived on hydramorphone. Husband began 2 drink more heavily, making things worse for me, had to call ambulance few times when he could not get off floor. Just after spine fracture he tried to physically hurt me, I called police, left home for 3 weeks. Went home after he quit drinking. I still suffer with my back if I stand up for more than 10 minutes or walk without back brace. I think there is something wrong with me because husband is wearing me down so much I’m almost at point of bringing him home, knowing it would eventually kill me. I suffer fear, obligation, guilt. My mother(dec), sister both narcissist. I’m booked 4 vacation Feb15. I would appreciate any advice or opinions. THANK YOU
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golden23 Nov 2022
(((((((((hugs)))))) I understand what a narcissistic mother and sister can do to your ability to self care and set boundaries both of which you badly need and have needed in the past. I also know what living with an alcoholic is like. No one is worth killing yourself over. No one!!! You have loving supportive sons and grandchildren to motivate you to build a better life and you can but you have to make some changes. I'm going to be very direct with you. If you don't make
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.
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We don't start over; we start ... again ... where we are, with the awareness to:
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
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golden23 Nov 2022
Yes, we continue from where we are at towards, hopefully, better things. I totally agree with what you say about forgiveness. One thing I read recently is that unconditional love and forgiveness for others are good, but that does not mean unconditional relational accessibility. We need to set boundaries for self protection. I love your "lists" and your focus on the positive. I have CFS/FM and I need to encourage myself with small accomplishments. Some days it is only getting out of bed, getting dressed and feeding myself properly - oh, and looking after the cat lol. I am sorry you are dealing with those big stressors right now. BTDT and, agreed, self care is not easy at these times. Hoping life gets easier for you soon. It's progress that is important, not perfection!
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Golden, I think we can build a new life. More than a new life, a new enjoyable and satisfying life. I can't imagine moving from a home of 40+ years, this compounds the difficulties that you will experience. It is ok to just slow down, nothing has to really be done today, does it? And now you have the frigid Canadian winter to deal with which will make it even more difficult.

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.
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golden23 Nov 2022
Thanks for your understanding. Yes, we can build a new and good life. What choice do we have? I suppose after my son died I might have pulled the curtains and lost myself in my grief and stayed that way. But I couldn't.

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
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Hi Golden,

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.
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golden23 Nov 2022
Hi Need (((((hugs))))) So good to see you here. With Windy posting it's almost like having the old gang back. Yes, I have felt like I have been caught in a time warp. I am very sensitive to patterns. Once I see a pattern I start thinking about what it means and if I don't like it, how to change things - maybe just myself. Or if I like it, how to encourage it to continue.

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.
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I recommend a couple books (the 4 agreements series - like a counseling session - you need to do the work but it works!) and Swedish death cleaning. I have used both of these and they have helped immensely. Decide what YOU want in your life and eliminate all the people (family or not) that are toxic for you. These things are NOT easy but they can be done and you will be much happier when you try these principles. Dealing with dementia and family dysfunction for many years. My prayers and thoughts are with you. I will be relieved when mom dies. As far as I am concerned she died long ago.
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golden23 Nov 2022
glisse - thank you for the suggestions. I am already doing both of those things by going no contact with my sister and downsizing my possessions and my house for sale and moving into a smaller condo. Both are very beneficial for me. I am sorry that you too have had family dysfunction and dementia to deal with and understand that you anticipate relief when your mum passes. That was how it was for me. Wishing you well,
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I want to thank each one of you for responding. Every response has helped me along my way. The sister problems go back to my earliest memory as a 3 year old child being berated by my mother for I knew not what, but knew my sister had told mother something to trigger her anger. Sis, as usual, was standing in the background with a little smile on her face. This pattern continued throughout my life. She lied to mother about me - ranging from telling mother I was pregnant after I had shared with sis that a young man I was dating had kissed me, to telling friends I was in a lesbian relationship with my best girlfriend, which wasn't true and which was a lot less acceptable in those days than these days to - you name it. I really wonder now why I thought I could ever have a healthy relationship with her. I think that dealing with mother and her Borderline Personality Disorder took so much of my energy at times, I didn't recognize the degree of toxicity in my sister. In between being mean she was very charming. My father who was my nurturer was an alcoholic. Our home was fraught with anger and conflict. I could only deal with so much at a time.

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.
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CantDance Nov 2022
Golden, thank you for sharing your story. Yes, to a great degree we can move on from a history of family dysfunction by making good lives for ourselves. I'm so glad you made yours.

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.
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I absolutely empathize with your story.
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
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golden23 Nov 2022
Dear soul. You have had too much to bear. Alcohol abuse and dementia were very hard for you as a caregiver. Your siblings behaviour is disgraceful. Have you had time for a grief group or counseling of any kind? You certainly need support. You essentially lost your whole family when your dad passed. I gather your mother has not been in the picture for a long time. You are certainly right that we all need support going through these large changes. I need it and you need it. Thank you for caring. I offer my support back to you. I hope you find that this forum on the whole has many individuals who will share and care with you. Best to you and your gent with Parkinson's. That is a very hard one to have and to care for too. Remember to take time to do good things for yourself. You need that.
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I tried to type some thoughts here, but I don't think I have anything to offer. I get it. And my life/caregiving years are/were fewer than yours. It's compounded grief, I think, that wears us down over years. And then when it rears up, it pokes the same old places. It stinks.

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)))))
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golden23 Nov 2022
ali - you have lots of value to offer - always, Your caregiving years were very intense and hands on and with your father, abusive. I completely agree with the C-PTSD. How could we not suffer it with abuse from childhood, exacerbated by having to care for the abuser? Folks, that is never a good idea! My personal thought is that you put so much into your schooling that other stuff built up. One thing I learned well after my son was killed was that grief (and I am sure other emotions) waits for us. If we don't attend to it, it waits till we have a quiet moment and comes crashing in. Keeping our mental health requires us to deal with our feelings to feel them (remember - feel your feelings), to learn about ourselves, to care for ourselves. That takes time and energy. I recall my dd having a big cry over something and then when it was over, saying "That's one less to go now," I don't know if we have a finite amount of grief in us, but I do know appropriate expression of grief helps. I agree about the neural pathways. I had that discussion with a psychologist years ago. Do the memories ever go away? Speaking from a biological perspective he thought not. However, in my experience we can alleviate the pain that is attached to them so the memories don't hurt any more. For me it took much work and that work is ongoing, I dearly love you too, ali. (((((hugs))))) back
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Can we start again? Yes, but it’s not a clean slate. After long difficult caregiving experiences I don’t think most of us ever get over it but we do learn to cope with it and move on. But it changes you, especially if the family is dysfunctional.

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.
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AliBoBali Nov 2022
My anxiety, nightmares, chest pain, and caregiving past are also tied together. I'm five years out and trying to let it alllllll goooooooo. Indica gummies haven't helped me as much as I hoped they might. You're wise to prepare for the future as much as you can. I wish you many peaceful years yet. Happy US Thanksgiving!
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Golden23, as I've read through your responses I have to say that YOU are a very young 85. My goodness, you are most definitely not ready to settle down in a rocking chair. Don't feel bad about moving forward. I may have missed it as I read through, but are you living in your own home or are you in some sort of retirement community?

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!
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golden23 Nov 2022
I live in my home of over 40 years with tons of memories. Its a 6 bedroom house and more than I need and than I can properly look after any more. I'm moving to a 35+ , 2 bedroom and den condo. Young old age runs in especially my mother's family whose women lived as productive 95 year olds even generations ago, There is longevity on my fathers side too so I have planned for a long old age. One needs money for that. I worked till I was 73 and had begun distance caregiving for mother. The continuing care idea is great. I'm not ready for that yet nor is my sig other who is younger than me, Actually I am not a very social person but an introvert, so a nice condo where I can walk around inside in the bad weather, read, cook a little, and visit a little with neighbours if I want to, works for me. My kids will have to play a role at some point but not what I went through. I'll make it as easy as I can for them. Hope you find what you want when that time comes,
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There is no wiping the slate clean. You are left with the scars of all the meanness that was inflicted on you. I have discovered that I keep going back to the egregious verbal abuse my mother inflicted on me during my childhood and find I am just plain angry about it. Im not sure why I picked this time in my life to revisit this, I thought I had put it behind me but I guess I never did. It will never go away. My sisters were subjected to her verbal lashings too and my relationships with my sisters are not close i believe in large part because we spent our childhoods trying to redirect our mother’s meanness to somebody else. We never bonded as siblings.

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.
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AliBoBali Nov 2022
"plain angry" Yep. But as you likely know, anger inside wears us down. So then I try so very hard to find compassion anew for *all of it.* Compassion for myself, too. I'm sorry for what you've been through. It takes no money to be kind, so I try to give this to myself and others daily in small ways, and learn how not to be through what I've experienced. Best of everything to you while you continue on your caregiving journey.
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Healing takes time. It doesn’t happen as quick as we want it. Eventually the pain and hurt will dissolve. For those who never lended a hand, or even said thank you, while you carried the load, I wouldn’t waste my time worrying over. Their time WILL come. You’ve done your best and now you can finally take rest. Enjoy it! Don’t let worrying rob you of your life. We all love our family but once they’ve crossed over to the other side, our job is done. Just long to hear those precious words by our Savior, “Well done thy good and faithful servant.”
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golden23 Nov 2022
Thanks for the scripture. It brought tears. We have to keep our eyes on what's important.
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I lost my answer looking up Brene Brown.
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
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golden23 Nov 2022
I do include pleasurable things in my life - be it getting my hair done, or a quiet cup of coffee with a square of excellent chocolate. We need to do those things for ourselves. I will look up Brene Brown. I think I have read her name before. The ability to redirect thoughts is part of my survival tool kit. I don't hide anything, I process it and have spent many. many hours of my life doing so. It is so important to integrate and resolve the experiences and the feelings, especially the negative ones which life inevitably brings to us. Here's to the hairdos, the manicures, the treats we can provide for ourselves!
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golden: I hear you as it relates to one's siblings. I am sorry that your sister acted in unkind ways towards you. Truly, I get it. My sole sibling, my brother uttered "I won't do the out-of-state caregiving." Well, not okay then. I wasn't going to live with my mother forever, but she hadn't planned for her elder years. She said that she was so glad that she stayed in her own home. That left me with a real dilemma, the only adult kid to apparently care. Our mother lay on her death bed while my brother traveled across the country. SMH.
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golden23 Nov 2022
I know you understand the sibling thing and am sorry that you have had to experience it too. Yes, the only adult kid that cared. Well said! Planning for our elder years is so important. My kids know what I want and have planned for and it is not to burden them in caring for me!
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It is hard to move past all of those hurtful experiences, but not impossible. I, as well, had big issues with my mother and sister, long story, but, in late 30s I decided to be my own person, which I was of course, it was just things were expected from me to make total changes, I was not willing to do that and led my life in different direction, happy and accomplished.
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.
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golden23 Nov 2022
Looking at your mother with compassion and empathy is awesome. That's the goal. You made a good decision to separate yourself from the dysfunction, I was doing well at a distance with mother and sister being buddies, travelling together etc. until mother came to visit me and stated that she was moving to be near me as she was older (85) and as my sister would not help her. Sis loved to have fun with mother but wouldn't do anything for her. The classic example was when sis was visiting mother and mother was in bed with flu. Sis was going out shopping and mother asked her if first she could make her a bowl of porridge for breakfast. Sis (who lives in Scotland, btw,) said she didn't know how to make porridge and flounced out the door to the shops leaving mother to fend for herself. That didn't surprise me. Sis's plan all along was to have mother near her as mother aged, and eventually inherit all. (This from a very reliable source.) Mother moving close to me turned my world upside down. I was happily singled, working and enjoying my life. at age 60. Mother was pretty independent for the next 10 years but then the troubles started as she evidenced early vascular dementia and so the care giving morphed to a more difficult level. It lasted another 10+ years. I am trying to understand my sister - golden child and sociopathic tendencies. I know it will help me forgive her, I have had many wonderful substitute mothers and sister over the years and lost most of them. Unfortunately. at my age they tend to pass on or get ill. One of the remaining ones, such a brilliant women, developed Alz. a few years ago and is essentially gone. But that's life. Sometimes it's hard but it is still worthwhile.
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Congratulations on your accomplishments of letting go. Letting go of those important family members and letting go of the emotions (good and bad) that they left you with is quite an achievement.

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.
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golden23 Nov 2022
I hope the bad memories eventually fade so they do not hurt you any more. I am sorry about your depression. I know how to shelve stuff. I've done it before. With mother I have worked at understanding and have forgiven and forgiven. I am in the process of doing that with my sister - much easier now that I have cut contact so the insults have stopped. Eventually I will work through it. I hope you are able to process the pain and anger related to your depression so you come through to the other side of it and leave it behind.
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The good news: you CAN Start again!

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.
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golden23 Nov 2022
So glad you and your wife are recovering nicely. I went through a few periods of real chaos too with mother, over and above the usual. I understand. I am downsizing and moving to be with my sig other in a smaller home and slightly warmer climate. I had a lot of mother's photos, paper etc. to go through and that has been cathartic. Nearly done with that now and it feels good. Life begins at 85??? Road trips are fun. We enjoy them.
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I would not recommend any future relationship with your sister. (I’m not sure whether you want one). I discontinued some horrific sibling relationships and am much better off.

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.
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golden23 Nov 2022
I too am definitely better off without any contact with my sibling, I feel so much safer! I agree that grief never fully ends. I miss my father more than my mother and he died 40 some years ago. Good for you for volunteering. Helping others does help us.
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Yes, you can start over. I would say that in most families there are hurts…some subtle, some huge, just one or two family members, sometimes more family members make more problems than they resolve. It’s so very common.

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!
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golden23 Nov 2022
You are right - I am still hurting, over my sister in particular and know I need to work that through. I am in counselling and have been off and on all my life. I've had a lot of hurts to deal with from childhood. Caregiving tends to brings these issues out. I have always had my own things. I never did hands on caregiving for mother and never could have. It would have been too toxic. I needed some distance from her. She was well looked after in her own home and later in facilities. It's definitely time to move on.
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Your situation is very similar to mine. My father passed in 1982. My mother in 2021.
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!
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golden23 Nov 2022
Oh my "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"
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.
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I have also thought that, “you can forgive but you won’t forget”. Then I recently heard a talk on this very subject. The speaker stated, “you may not really be forgiving if you don’t forget.” Wow that hit me!
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.
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golden23 Nov 2022
That is a great thought and a great example. I find I do tend to forget - put out of my mind - not dwell on the past when I have forgiven. Still working on my forgiveness towards my sister. I knew from a very young age that mother had problems and I was not the cause and I forgave her on an ongoing basis. For years I thought I could have a decent relationship with my sister, until I finally accepted the reality of how she is and that any relationship would always be toxic. I am working to understand what being groomed as the golden child does to a person and also the causes of sociopathic personality. I find if I understand I can deal with things better and forgive. Yes what you have written helps.
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Extended " caregiver exhaustion" is real.

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).
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golden23 Nov 2022
Good suggestions. I have 1:1 counselling with a qualified pastor. I know holidays can be difficult, but truthfully I grieved the lack of a nurturing mother most of my life, so when she passed I didn't have a big burden of grief left. I do still have issues to deal with re my sister. For some years now my holidays have been spent very quietly. It suits me. I am Canadian so not involved in the American Thanksgiving.
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It takes a long time, as you were the responsible person for so long. Seek therapy or counseling if you think it would help. You've been through a lot. You can now build a wonderful life for yourself. Seek joy and fulfillment and spread your wings! Do things that make you happy, treat yourself like the precious person that you are and give yourself the love that you didn't get from your mother. We shouldn't forget our past, but we can learn to accept and forgive, and move on. All the best to you on this new phase in your life!
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golden23 Nov 2022
Yes, I was the responsible person for a very long time. At times I wondered who would go first. I have love in my life and, by and large, peaceful relationships which are precious to me. Best to you too.
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Not nearly as a complex situation as yours, but yes, we can all relate. Middle-distance care-giving for my parents for the last decade. More intense since my dad died in 2020. (COVID before there was a vax.) I was consumed with trying to access my parents' investments to pay for mom's 24/7 care. Call centers that I wouldn't wish on my worst enemy. Had maybe a 6-month breather before mom's sudden decline. She died at home a month ago after just 2 days on hospice. It still doesn't seem real in a way my dad's did. Win-win for us all (my sister was/is very involved...my brother? Don't get me started.) I always felt like I never grieved my dad...so much to do+ But now that they're both gone, I feel hollow. Yep, we'll be selling the childhood home. I know I should feel relieved, but Sundays, when I'd tavel 6 hours to help them/her, I don't know what to do with myself. ❤
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golden23 Nov 2022
I see you are still grieving and that is natural. Multiple loss (dad and then mom) is hard to process. What to do will come to you in time. Be kind to yourself. 🖤
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