I joined another caretaker for stroke support group and attempted to share. I was called out and looked upon as a very selfish person as well as someone who needed to be educated. Since then I've been sitting in my own sh*t. Today the smell has gotten the best out of me. I'm tired of feeling like I am the only one holding it together. I'm tired of grieving for someone who's not dead but becomes so sad when the thought comes up about him dying. I'm tired of always being the positive person. The fixer/smooth it out kind of person with behaviors. I'm tired of missing human touch by a man. I miss not sleeping with him. I'm tired of feeling like I am the only one who really gives a rat’s a*s. I'm tired of his non-compliant behavior when it comes to his health. I’m tired of the mind games. I'm tired of being treated like sh*t at times. I'm tired of the place I live, that is supposed to be a comfort base being everything but that. I’m tired of working as a nurse full time and coming home to do my other caregiver job. I try and try so hard. I never put me first. I know whenever it is his time, I’m going to be lost because my routine in life is surrounded around him. I have resentments and fears over this whole situation. I have 35 years of sobriety. I quit going to meetings after his stroke because I worked full time, took care of his/our children at that time (their assaults now) and his mother until she died. I just started to go back to meetings last year. Now I’m starting to do old behaviors… isolation, not going to meetings, slacking on calling my sponsor and I know that’s have of my problem. Because I feel trapped. People say that I’m in an abusive marriage by manipulation, controlling and verbal abuse. Because of the things he says to me. People say “You should just leave ". Then theirs me thoughts of him taking his own life if I would leave. Me thinking what kind of life does he have? He didn’t ask for this to happen. But then I start thinking about before the stroke he couldn’t hold a job. I did everything for his children. I did all the things that needed to be done around the house. I ignored all of these facts because He helped me when we first met because I had just got out of a 14 year abusive relationship with my first husband. I was so broken, so fearful so lost. He helped rebuild me, don’t get me wrong I did a lot of the work with sponsors, meetings and soul healing. I live in the past before his stroke because that’s where I was happy. The tears begin to fall... I feel like all I do is waste peoples time bitching, complaining crying… because in the end. I stay. Now he has another infected toe on his good foot. Lost toe toes on the other foot the same way. Won’t go see the doctor. Won’t go to the ER. So I’m playing nurse at home trying everything to avoid the same outcome as last, and still I stay. I do everything for him from bathing wiping cooking serving dressing. I love him. But am I still in love with him. What is love? I believe it’s my actions. Then why can’t he do the same for me with things he still is capable of doing. I even had someone once say... you must like it. If you didn’t you would have left a long time ago. I’m tired of the constant chaos in my life. I have my own health issues of my own. But does it stop me… NO. Because that’s me. Some people say... You’re so strong. Not really...If you could only see under the masks I wear. Don’t mean to be a downer... Just being real.
It is time for placement, for separation of finances. He didn't ask for this, but IT IS HERE. And nothing will ever change that.
You at least are using the right G-word. Which is grief. You feel grief because you stand witness to honest suffering and you have human limitations; you aren't God, You can't change it. The word some choose is the "other" g-word, which is guilt. It isn't for anyone to suffer guilt here. No one caused this. No one can fix this.
I think there is little recompense in being told you are strong. To me I see only that you are willing to give up your life because his has been taken from him. To me that doesn't make sense.
Consider placement, separation of finances, and supporting him with gentle visits for so long as he has to suffer this life.
I am so sorry. Not everything can be fixed. And this most CERTAINLY cannot.
Lady, you have been through hell and back in your life and may I say that you come across as an extremely wise woman who is desperately struggling to cope with the crappy hand that you were dealt.
You say that your husband didn’t ask for this, that is certainly true, but neither have you asked for this. No one ever desires to be faced with challenges such as what you currently have.
Sadly, this is your reality for now and I sincerely hope that you will find a way to break free from it.
I will always remember something that my grandfather once said to me. He believed that heaven and hell was right here on earth. Sometimes it feels that way, doesn’t it? This is like living in hell for you.
Congrats on your sobriety! It’s lovely that you are grateful that your husband supported you in your time of need. You were the one who chose to cooperate and worked the 12 steps. Good for you!
I do understand your frustration in regards to maintain your sobriety. I grew up with an addict. Sadly, my brother died several years ago from liver issues.
Please don’t feel like you owe a debt to your husband for supporting you. He chose to support you and you certainly have been by his side throughout his struggles. You now recognize that enough is enough, right?
You must place your needs equal to your husband. One person, whether they are a spouse or not can only do so much, especially in your specific circumstances.
Of course, you will grieve for what could have been if he hadn’t suffered a stroke. This is a completely normal reaction.
I know that your husband is younger than most people who live in a facility and you probably feel badly about that but I have occasionally seen younger people in a facility that do not have anyone to care for them in a home setting.
Have you considered placing him in a facility where he will be cared for 24/7? It truly is the best option for both of you.
Even if your husband was gracious for your care, it’s still too much to bear. It’s physically and emotionally draining to be a caregiver. You’re a nurse! So, you never have a break from it!
I am so sorry that people in your support group spoke harshly about your situation.
Was this ‘in person’ or online? Regardless of which, they are ignorant and haven’t walked in your shoes. People should also understand that not everyone wishes to be a martyr in life.
Unfortunately, some people are idiots and speak about things that they don’t know anything about. It happens in ‘in person and online’ groups as well.
I had the opposite situation as you in my ‘in person’ support group. I owe this to the fabulous licensed social worker who led the group.
The social worker carefully monitored everyone’s interactions with each other and no one said anything negative about another person in our group.
I wish that you would have had a positive experience. You don’t deserve to be kicked when you’re already down.
I have found tremendous support on this forum and I know that you will too. I cared for my mother for 14 years in my home. She had Parkinson’s disease and dementia. She lived to be 95 and died in a hospice care home.
Best wishes to you and after everything has been settled, please get some well deserved rest and do something special just for you!
Sending you a bazillion hugs and please keep us posted. We care.
If he is NOT competent then get the guardianship underway and place him. You say "he says he says" but the fact is that if he is not competent it doesn't matter a fig WHAT he says.
You say you recognize that this is/could be ruining you life. Then you must leave to preserve your life, or as I said, cast your life as worthless upon the funeral pyre. You are smart. You are educated. You have lived this for years. The choice has to be yours. No one else can help.
I am so sorry to be so tough love, and I fully understand this is difficult, but as things stand you will get nothing but the sympathy of others, and eventually all too little of that as they will tell you what I told you, to place him or to leave.
I am assuming there are no children here to support, to advise, to assist in any way?
I am so sorry, but, again, that and 2 cents won't even buy you a stick of gum.
My best to you and truly I do wish you luck.
You have given far too much, to far too many people, for far too long. It’s time to put yourself first for a while. Get your second wind, make the changes, and you can always smile nicely again in the future.
Practically your husband needs help, but you don't have to be the one helping him. Working a responsible job then coming home to another job with an abusive person is too much for anyone,
Can you please just look at the present, never mind the past, and make some plans for his care and a release for you. Love is mercy and justice. There is no mercy for you in this situation and no justice for him. It's out of balance and you are carrying the heavy end.
You have your sobriety to care for - congratulations on 35 years. Please keep your needs in the forefront. If you fall you both do in the present situation. You need more of your time and energy for you. Do whatever you have to to make your life good. Let go of controlling him. It isn't working anyway, is it?
Control/change your own life. Let him work on his. You deserve better than being treated like sh*t!
Its one thing to care for someone who cooperates another to care for someone who doesn't help u help them. You are in a stressful job. My daughter is an RN. Would come home and was expected to do everything while her husband sat on the couch. Walked in one time at 8pm and was asked "whats for dinner" her response "you couldn't have ordered out?" A slip saying she was not happy had this man walk out on her. No problem, she had been fending for herself since she was 16 and worked all that time. She actually has not missed him. Once her house is clean, it stays that way.
You know whats going to happen to your husband if he doesn't take care of that toe, he is going to lose a leg. And if your there when it happens, tell the Hospital and Rehab that he is not returning home. That you will not be caring for him. He needs to go into 24/7 care. There is a way to make sure your assets are split. You can allow the State to become his guardian. Lots of people just leave and don't look back.
Just because you are a nurse and he is your husband , you don’t have to take care of him if it’s so toxic for you . It’s unhealthy . And the whole “ in sickness or in health until death do us part” is old school . That was written way before people lived so long in a very slow death and need care for much longer . Please place him . It’s not easy . But the longer you wait the more damage is happening to you .
I took care of my parents ( Dad had cancer , mom had stroke and dementia ) while working and raising a teenager . It was horrible , I neglected my marriage, friends, life , and my own health because I was too busy and felt I had to take care of them . I regret that . Eventually had to put mother in AL. Now hubby and I are looking after very difficult FIL in AL. After taking care of my late mother with a stroke , Dementia, I don’t have the bandwidth to deal with FIL with Dementia. He’s acting very similar to my mother and it’s bringing back a lot of memories and anxiety . Both my mother and now FIL very difficult , uncooperative , and manipulative . I know I aged terribly from caring for my mother. I’m trying not to let FIL interfere in our lives , trying to find ways to deal with horrible visits with him . Please don’t wait to get out of this situation.
You need a break..maybe a temporary one possibly a permanent one.
It is not a matter of IF you will break but WHEN,
With the infection on his toe...this is a good time to tell him that he HAS to go to the ER. Once you get there talk to a Social Worker. Tell them that you can not continue to care for this person. You a break, maybe a stint in Rehab might be good for him. You would get a break and once there you and the Social Worker can figure out placement for him or you need a full time caregiver.
For a Support Group to call you out and call you selfish is unconscionable and much like tossing a rock to a drowning person.
Keep in mind that a stroke will damage a portion of the brain. Part of that brain is the person he once was. He may not be able to control everything he is doing and if this is the case this might be a reason for his actions but not an excuse.
I was reading some of the other topics to get out of my head. This one gentlemen who addresses himself as a Christian believes when people place loved one in nursing homes the people are just throwing them away. He thinks its wrong to turn your back on loved ones because of their illnesses or sickness. So that got me a little. Right now Im just breathing and hanging onto the things Im gratiful for! Have a wonderful night!
Loyalty?
Kindness?
Honor?
Can you think on them & list some?
Our values underpin & shape our behaviour. Sometimes they can skew our choices so much until we forget self-care, self-respect, self-worth.
What made you ask about the word 'selfish'?
One I hope for....To thy own self be true
Spiritual connection with God
Honest relationship with others
One I hope for....Honest relationship with myself.
To Help people in situations Ive been
To love people the way I want to be loved
One I hope for......To believe Im worthy to be loved
One I hope for......I deserve to be forgiven too.
I need to have a talk with my sponsor on this...THANK YOU.
I'm hoping that you work for a company that has medical benefits. If so, please seek help through a therapist. Caring for a stroke victim is extremely hard. You will need new life skills for that.
You are a caring person. Being a strong person doesn't mean that you have to take on all challenges by yourself. Please seek the help of a therapist so that you can make it through these new challenges that are being thrown at you.
Don’t tell him he’s not coming home until he’s in the hospital . Tell the hospital social worker that you can not care for him anymore and that he’s unsafe at home alone . You can also call APS now and see if they can get him removed from your home asap because he’s not safe alone at home .
About Me
I have been a geriatric nurse for 25 years. Ive been a care giver my whole life. My husband had a massive stroke in 2010 and almost died. He had suffered from grand mal seizures as a side effect. He is noncompliant and manipulating. Im tired of being in the same rut. Im over weight and have health issues of my own. My husband is unsafe at home alone due to falls and poor decision making on his part. I do love him but this is destroying my own health along with mental help. Im tired of living in the past. Am dreading the future.
If your DH is not safe at home alone due to falls & poor decision making on his part, he should not BE home alone. Look into getting him placed in a SNF with Medicaid funding the costs if you have no assets to self pay (as most of us don't). Way2tired has good advice about the next time he ends up in the ER and refusing to accept him back home. That does NOT make you a 'selfish horrible' person at all, but one who recognizes her limitations AND her DH's real needs which can only be fulfilled in a managed care environment. And helped by teams of people working in shifts 24/7/365.
Why is it that women (mostly) are told we have to die at the altar of caring for others, otherwise we're 'selfish horrible' people. Nobody's walked in your shoes except YOU, for a very long time now. So only YOU can determine when enough is enough and DH has to be moved. You deserve a life too, which means you can go visit him DAILY if you'd like, but you get to go home alone and SLEEP and get restorative help that way w/o having to worry yourself sick about DH.
As far as your sobriety goes, 35 years is a LONG time to be sober! Congratulations! Do you still wish you could have a drink when the going gets tough? If so, definitely get back to AA and in touch with your sponsor, the whole 9 yards. I've been sober since 2008 and I don't think about having a drink anymore, even when a big life crisis strikes. So while I know I'm never more than 1 drink away from a relapse, my mind doesn't instruct me to go there anymore. It's simply not an option. And the past few years have been hell on earth as far as stress goes/health issues, and all sorts of reasons TO have a drink. But I just don't even consider it anymore, thank God. Your sobriety needs to be #1 on your list or else it will fall down to the BOTTOM of the list & you know what THAT means. :(
Wishing you the best of luck with a difficult situation. Please remove yourself from 'support groups' that do not offer you the support you need and deserve.
You are a nurse. Great profession and I have great respect and admiration, I loved the Hospice Nurse that came to our house weekly.
Here is my question....
IF you were caring for a patient and the very stressed spouse was experiencing the same thing as a professional what would you tell them?
Much harder with the nursing knowledge and being the family. Im a very caring nurse and treat my residents as family. But you learn as a nurse that theres a time to have your nursing cap on and a time to be a person with emotions. An a time to be you. Im always in a nursing cap, if that makes sense to you. Because I love him.
Im still writing about my values and meeting my sponsor Saturday to go over it with her.
Im just coasting right now. Im really trying harder to respect his choices even if I dont agree or knows his choice might hurt him. I'm trying to give up on some of that control. An believe me its hard.
Tonight I expressed to him that I want to end our evenings now on with a reason why we love one another. He said " Because your you " Which I acknowledge the loving the answers with a long aweeeee. An mine was " Because you opened up and talked to me on what you were feeling. We both seem to like the idea. He put a smile on his face that I havnt seen for a while.
Thank you people/Grandma1954 for being here. I am listening to you. I am staying openminded to your suggestions. An I am doing the work. An I am praying to God every day.