I have taken care of my boyfriend (58) for 9 years. He had a serious TBI from a motorcycle accident at 20 resulting in short term memory issues, mobility problems, right hand paralysis, tracheostomy and a seizure disorder. Through all his problems he had a great attitude without bitterness and more determined than anyone I had ever known.
I committed to give him a full life with little anxiety and opportunities to explore and enjoy life to the fullest.
On our first anniversary he had a massive stroke. Together we struggled through the repercussions of the stroke and carried on. We lived in Philly then and received little or no help from his family (3 brothers, 2 daughters). His family was not at all accepting of me from day 1 and treated me horribly. Once he was on his road to recovery we decided to move to my hometown of Dallas to avoid constant negative intervention from his hateful family. We had a challenging but wonderful life in Texas.
About 2 1/2 years ago I noticed many changes in his attitude and behavior. I had a neuropsychological test performed and we learned he had early onset dementia. Over time he became physically, verbally and emotionally abusive to me. I was raised by two extremely abusive parents and abuse from a person I had done EVERYTHING for was very hard for me.
In May 2015, after much discussion I moved him to an independent living apartment at a retirement community with assisted living and nursing home facilities on the premises. The main reasons for this transition was that he had lost his ability to walk completely and my home was not set up for a person in a motorized wheelchair. We agreed that we thought not being together 24/7 might have a positive impact on our relationship. The facility has PT lab, brain and memory lab, a gym, a church and lots of activities. I stayed on as his caregiver 7 days a week.
I furnished his apartment beautifully and for a time all was right with the world.
A couple of months after he moved there the abuse started again and intensified. He started accusing me of things I would never do. I couldn't reason with him about anything. He lied constantly to me and manipulated me in a million different ways. At one point he told me he was very loyal to his nurse because he was having sex with her. Ouch!!!! He constantly filed false police reports against me and called Adult Protective Services saying I was abusing him.
I stopped being his full time caregiver but ran to his rescue several times a week, cooked for him, shopped for him, took him to his doctor's appointments etc. but matters just got worse and worse. I brought him home on Thanksgiving and Christmas and he physically and verbally abused me the entire time.
On the Tuesday after Christmas he called me at 6:45 am asking me to come over because he was freaked out about numerous issues. I went and took care of his concerns. During that visit he admitted he had switched POA from me to his brother who he had not even spoken to in 7 years. I asked him why and his response was he did so because he was mad at me. I asked him if he knew what his family had planned regarding his care if he move back to Philly. He said he had no idea. I told him I thought they would just stick him in a nursing home and leave him there until he died.
I called him on New Years Eve to wish him a happy New Year and his phone was disconnected. I contacted his neighbors and they reported they had not seen him in days. I went to his place 4 times and couldn't get any response. A few days later I got a change of address form from the post office and I knew he was gone. He must have known for quite sometime exactly when he was leaving Dallas. I was so hurt that after nine years he would leave without a word to me. By the time I figured it out his complex had disposed of the $10,000 worth of furnishings I had purchased for him.
I found him yesterday on a new Facebook account. I could tell from the background that indeed he was in a nursing home at 58.
I am overwhelmed with anxiety and depression. Is there more I could have done to prevent this outcome? Should I have been able to just look the other way or close my ears to his abusive ways. How could he leave after 9 years without an explanation or goodbye? Why was I his constant target of abuse? Did I waste 9 years of my life that ended up not mattering to him? Do I have reason to feel guilty and ashamed that I could not hang in there with him to the bitter end? Will I EVER get over this emotional pain? Why was I not good enough for him? What more could I have done without totally self-destructing? Please someone, help me answer these questions!!!!!
You go on to question whether you mattered to him at all and you wonder why you weren't good enough for him.
I think he did you a huge favor by moving away and cutting off all contact. His disabilities aside he was abusive. You stated that he physically abused you on more than one occasion. And now you feel guilty for not being able to take more abuse??
I don't doubt that your heart is broken. You were with him for a long time. But maybe you can take this time to yourself to figure out what kind of relationship you'd like to have next. What you deserve. Because you deserve more than what you were getting with this guy. And if another man lays his hands on you in anger I hope you call the police on your way out the door.
You need some significant guidance and support to learn to set healthy boundaries, and to be able to achieve a healthy loving relationship - which you deserve. By ebtering into and continuing an adult abusive relationship - and one that mirrors your experience in your family of origin - you are attempting (unconsciously) to "FIX" the original abuse yu acquired at the hands of those who were supposed to love and care for you.
You CAN move beyond this! But you'll need help to do so. Another option - and one that worked better for me than therapy (although therapy gave me a lot of understanding) to move on - was Emotional Freedom Technique, also known as EFT and/or the Tapping Method. You can check this out on youtube. I found it worked very fast.
Best wishes as you rebuild your life. I hope that yuo've learned some valuable lessons from this experience. Please don't try to remain in contact with your former "boyfriend" who is clearly not well in so many ways.
Having abusive parents myself, if you are like me, I find myself staying in relationships too long because I am used to pouring myself out for them. Sacrificing myself for "love" and accepting pain in return, why, because thats what I got from my parents.
Take the time, and seek help to grow from this, because it probably will happen to you again...
I am 55 and thought I would Never sacrifice myself again (dammit)
One day you will see what a real blessing this was that his family stepped in- Anita has it right.
WHY would you feel guilty for not being able to cope with something that no one should have to tolerate?
I think the answers to your question first begin with asking yourself that question. Abuse is not something anyone should even consider tolerating.
Tex the guilt is easy to acquire and not so easy to remove but you are where you are and it isn't going to change. The best you can do right now is to amputate the man from your life and think about the future and what you want. Don't let the past define your future for that my love is in your hands. So scream a little be angry a lot and take pride in the care you did give. xxx not an easy road but one you have no choice but to go down
LW, I am sorry for piling onto your problems, and I didn't mean to be harsh, I did apologize for that. I will reiterate your thinking is very very wrong. You have lost years of your life. I wish you well in the time you have left. But you can't really do this alone, you desperately need psychiatric help. Please, for your own sake - let it go, you have spent enough time, effort, and emotion. It's over, as far as your bf goes. I know it's hard, I understand how you feel, but anyone can see you must get help. So please do that. Because this board has many people who care, and they all try to be polite and tiptoe around and be nice, but hon: you need help desperately, you DESERVE it.
I was raised by two extremely abusive parents and taking (sic) abuse from a person I had done EVERYTHING for was very hard for me.
to mean she had an abusive childhood hence my comment but whether the OP experienced personal physical abuse or the emotional abuse of witnessing it, it still leaves its mark
I think early life abuse becomes a learned behavior, and an apparent way of life. What else would a child know if the parents are abusive? The child may think that is the way other families live, until interaction with other children might reveal it's not.
Seguing into adulthood, being a caregiver to someone who has the tendencies to be abusive isn't the same as being in a work environment where one is paid for his/her work, and can develop self respect. So that element is entirely absent to counteract the negativity and perhaps low self esteem that the abuse person feels. I.e., a good means to get more of a perspective doesn't exist when someone who's experienced past abuse works for free as a caregiver as opposed to a paid position out in society.
Nevertheless, I also think that the abuser lose respect for, and continues to lose respect for someone who tolerates abuse. But that's an issue with him, that he even continues rather than walking away from the relationship.
The BF knew he could get away with it; there was no incentive to consider changing his behavior.
OP, if you're not comfortable with or can't afford therapy, try to find some support groups for abused and battered women. I think you might find answers in that kind of supportive environment as others explore their own situations.
Guess it is easy for someone else, not in my shoes, that if he didn't appreciate nine years of love, advocacy, excellent care and back breaking work "no loss"? No loss to whom in your opinion? Huge loss for the last decade of MY life and unfortunately a huge loss for him as well though I am sure he wasn't seeing things clearly. Must be easy for someone who thinks things are so black and white. Though in the last years he treated me poorly and I needed out that does not alleviate my sadness any or my overall concern for what happens to him in the future. Would be easier on all of us if we could just stop caring about those who are suffering from dementia or other neurological issues. I worry the most about if he knows what is happening to him or does he know he is confused? Abused or not I still have great empathy for him and want the best for him.
As far as "the NEXT" relationship for me . . . There will never be a future one. I had the best relationship possible for eleven years until he died 11 years ago.
I don't think I am getting my point across that my despair now is in worrying about how he is, is he suffering, is he aware that he is losing his mind, does he somehow think I abandoned him? I really just want to sit and hold my once best friend so tightly and tell him everything will be alright. I thought I would be with him until the moment he took his last breath and I don't even know how to reach him. He struggled through so much for almost 40 years it seems that going out with dementia is another cruel reality for one person to handle.
The person that you describe from your past is not unlike many other patients of TBI and eventual dementia. Their behavior may be odd, irrational, and even cruel. An observer may interpret it even as manipulative. But, it may be the patient was functioning at the highest level that he can with his condition. To expect thanks, praise or appreciation may not be realistic. I would try to move past the need to understand how and why it happened.
Often the spouse of a person with a TMI may be forced to leave the marriage or the home due to the unacceptable behavior of the patient. They question where the love is? What about the vows, the care the devotion? Well, with brain damage, the patient may not be able to process those emotions or act in ways that we consider appropriate.
Why not attend some support groups of other family members/partners who have suffered the loss of their marriage/relationships? I would imagine you would share much in common. Often those patients hurt the ones they love the most, but they are too damage to stop or even understand that it's happening.
I think that our expectations govern our reactions and unless we are very realistic, we may be very disappointed and hurt. To me, it's like getting annoyed with a coma patient because they refuse to have a conversation with you. They aren't able to do that, even if they appear to be breathing and have their eyes open.
I wish you all the best. I hope that you can give yourself the praise you deserve for your devotion, but then give yourself the motivation you need to accept things that you cannot change and move to a more peaceful place in your life.
People who are abused as children so very often grow up super sensitive to "helping" and being aware of other's emotions and needs to the point of losing themselves completely in the care of others.
I know I did it, and still do it. And I have realized that there isn't going to be the gratitude and the "thank yous" down the line. If you choose to make your life be one of caring and compassion, you have to self-actualize and not be angry or depressed that people don't recognize your compassion and care.
You have absolutely NOTHING to feel guilt over. My gosh, you should be awarded sainthood! The person you loved and knew is essentially gone--yes, that is absolutely awful, but the strokes and such took him away. You can't be responsible for that--
I agree that you DID NOT lose those years. I believe that all the good that is done is still out there in the world. You made on person's life much better by your kindness. That's not a waste.
The abuse was a sad side effect of the injuries and disease. In time, you will be able to let go. Mourn as if he had died--and move on. You sound like a lovely, loving person who will continue to love and care for others. Take time to heal.
But Tex - really? Your point is really that you are grieving for your lost boyfriend for his sake, and you and your feelings don't matter? No sale here - this site is full of tales of caregivees who lash out at their caregivers for any number of reasons - losing mental acuity is not something they want to acknowledge, so blaming the closest person to them seems reasonable to them; they feel safe lashing out at the caregiver who will keep caring and coming back for more no matter what, but control themselves for someone else who has boundaries and limits on how much they will take; the very fact they need a caregiver to do things for them upsets them and they are filled with resentment and frustration. There are lots of emotional and practical (though not valid or acceptable) reasons the closest, most assiduous caregiver gets the brunt of it all. You tried to be a saint - and so you were to the best of your ability - but it did not work out in the long run, maybe because he did not need or want a saint anyways. You misread, he misread. Punishing yourself publicly or privately is not going to accomplish anything
Is that the main thing you really want now - to stop feeling guilty? The way you stop feeling guilty is looking realistically at what you did and did not do, and if you find you really have done things wrong, ask forgiveness. If you cannot ask the person you wronged directly, you can ask God, you can go to confession to make that forgiveness more real, but honestly, the person you have wronged the most is truly yourself. And on the flip side, you have people basically telling you that you did not do wrong, except for maybe having done more than you should have; but we were not there, maybe we are wrong even to say that. You stop feeling guilty - both the true guilt and false guilt - by looking back realistically and yet also with compassion for yourself as well as for others. Forgiveness and acceptance of human failure, frailties, and imperfections is how you move on. Cry, be angry, let yourself accept what has happened and where life has brought you. And if the therapist you have had for 20 years is not leading you in that direction then start over with a new one. Somehow start thinking differently about who you are and what you owe other people, and why you owe yourself respect and acceptance too.
OK go ahead. Even if he WAS Romeo to your Juliet decades ago. See how that works out for you.
You write:
I am overwhelmed with anxiety and depression.
Are you taking medication for this ...if not it might be a good idea to see if medication will calm you enough to deal with the issues. Anxiety and depression serve only to cloud issues and you can very very quickly find yourself going round and round in circles trying to lay blame where it actually doesn't belong.....very often at your loved one or worse still yourself.
Is there more I could have done to prevent this outcome?
Well possibly... if he had been diagnosed with dementia you could have challenged the POA change (you didn't mention whether it was for for health finances or both). Maybe you needed someone on your side at the facility to warn you that events were changing but as that didn't happen then you probably couldn't have prevented the outcome.
Should I have been able to just look the other way or close my ears to his abusive ways.
Close your ears to someone with dementia...hmm tough one that especially given your background of abuse because the words will cut deeper than for those without that experience I suspect. You do have to keep telling yourself that dementia is a disease that attacks the brains ability to act with any semblance of normality and the longer it continues the less normality there is. Also it is NEVER the same for individuals - it can't be given our individual backgrounds and socialisation although there are similar traits.
As for physical abuse - no you should NEVER be expected to tolerate physical abuse...sadly for some people that is the nature of the progression and if there are other complications, they too could have impacted. When you are experiencing physical abuse it is time to step aside and let the professionals take over. You aren't trained to handle the person or deal with that type of behaviour
How could he leave after 9 years without an explanation or goodbye?
Dementia takes away the normality and you must not take this personally however personal it feels. My mother, for example, has a dependency disorder and she will say whatever SHE thinks someone else wants to hear so to her, if the wrong people at the wrong time suggested she should go somewhere, she would go rather than deal with confrontation. She is almost childlike in that aspect. Of course if I suggest it .....no deal and no rationale for that either
If he felt unable to say goodbye because to him it meant confrontation he would just go PLUS you are talking about someone with dementia (OK I stated the obvious) They have lost the capacity to rationalise choices they make. My mother can still make choices but they are very very limited. She might choose to have one optician over another but she could never explain why.
Why was I his constant target of abuse?
Because you were there. You were the one he was frightened of losing - initially - and in the words of a song we always hurt the ones we love and that is so true. Childlike if he could not have everything the way he wanted it (whether or not you knew what he wanted then you would be in the front line I am afraid. Somehow despite the disease some people with dementia still manage to 'showtime' to others, especially in the earlier stages of the disease.
Did I waste 9 years of my life that ended up not mattering to him?
Only you can answer that one Tex but bear this in mind what of the person who loved and married at 20 only to find out 60 years later that their spouse had dementia and didn't even know who they were let alone mattered....would they feel they had wasted 60 years of their life? No but they may grieve for the loss of the 'person' that their loved one once was. The emotions of the loss for you right now are overriding the base issue here. Better to have loved and lost than not to have loved and you had some good times together I hope (or else you wouldn't have stayed at least I hope you wouldn't have)
Do I have reason to feel guilty and ashamed that I could not hang in there with him to the bitter end?
Absolutely not - the time had already come for professionals to take over.
Will I EVER get over this emotional pain?
You will but it will take time and you will have to probably have some help in seeing the reality of what, for you is a dire situation.
Why was I not good enough for him?
You were but his brain could not process this
What more could I have done without totally self-destructing?
Absolutely nothing you did all you could and more
The other point of mine that I feel got missed somewhere is that I have never allowed any man before Rich to abuse me in any way. I haver lived most of my adult life without a commited partner. My career came first and I was never a person that felt I needed a man to complete me. I had my dream relationship with the real love of my life and he passed away after ten beautiful years together. We never lived together which was a positive thing. I think my original question regarding feeling guilty is that I know Rich (before dementia) was a loving person who treated me very well. As the dementia got worse his behavior became really unpredictable and I seemed to get the brunt of his frustration, anger, confusion etc.. One day he would go to the mini mart on his wheelchair and spend his last dollar to buy me flowers. We would go out to lunch and have a wonderful time. Two hours after I left I would start getting hateful texts from him. I never ever knew what Rich I was dealing with at any given moment. I had so much empathy for this man who had had such a tough life and now he is dealing with this dementia issue. I know he's afraid, confused and feels helpless and I wouldn't wish that on anyone. He called me his "Superwoman" and I think he thought I could fix this problem for him like I fixed so many things for him in the past. I think he felt abandoned by me when he moved to his own place at Christian Care and after three months I stopped being his primary caregiver and hired a nurse and daily caregiver from an agency. The first caregiver stole every penny he had. Second caregiver brought her husband and baby to work with her everyday. She had a long criminal history and Rich wasn't on board with that so I fixed more issues. Neither of the caregivers could boil an egg so I was there a lot preparing healthy meals for him and picking up the slack everywhere like making doctor appointments and taking him, resolving never ending problems with Medicaid, making sure he had all his meds etc. having said that, I got the impression that he had it in his head that I had just thrown him out and left him to figure it all out on his own. That's probably what fueled his anger towards me. So as you can see I was not ever going to put up with his abuse so I protected myself my removing him from my home. Things still escalated so I stopped being available to him every day when I removed myself as his daily primary caregiver. I am beginning to realize his move back to Philly was a blessing for me but I hate that they just stuck him in a nursing home at 58 which is where he will will remain until he dies. They DO NOT want to take care of him. They reluctantly agreed to get involved - if they cared about his well being perhaps in seven years they would have picked up the phone to give him a call and check out how he was. None of them were grateful for all I did for him. All I got from them in nine years was criticism, hatefulness and spewing venom. The never really got to know me. Have no idea who I am as a person, or how hard I worked to give him a great life, or recognized I gave up a lot in my own life to care for him.
I miss Rich but know I was hanging on by a thread for the final two and a half years. I could no longer fix things for him and I had to start fixing things for me. I'm obviously am still working on myself and jump starting my own life. I'm not in the market for a new man. I function well alone and am pretty sure a new romantic relationship is not in the cards for me.
Thanks again for those of you that have given me support but I have to say I was surprised that some of the posts were so hateful and critical. Some totally condescending and mean which made me very sad.