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My mom was very active person until 90 years old when she got into ER with aspiration pneumonia, being on intubation 3 days and then her dementia worsened. She does not remember she was living in my house 15 years, she does not remember what happen to her, she lost her desires to live. She is in rehab now and on feeding tube and if her ability to swallow will not be back, I can't take her home and she'll go to a rehab facility. I feel guilty and helpless, my brother is far away and does not want even to come to see mom, my family is supportive but my husband thinks that she took 15 years of his life with me as she was a very demanding person all her life, so he also does not want to visit her, so it's all on me. I am feeling as I am slowly dying too, seeing her life miserable and coming every day to rehab for nothing, I can't help, I am just crying….I read all similar posts and I know the advices will be, stop coming so often, live your life for you and your family. It's easy to say and hard to do.

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It IS easy to say and hard to do.  But guilt?  For what? You can't control your mom's illness, can you? Important to get a healthy perspective on what reasonable guilt is, not the emotional feelings, but the reasonable facts. Your brother's relationship is his business, your husband's relationship is his, you can't control them and why should you? Sounds like your mom made a lot of selfish decisions along the way and the consequences have come home to roost.  No one of us can "make" another's happiness - you do not "owe" this to your mom. But you did make marriage vows to your husband and it sounds like he has been very patient and understanding. I'd suggest supporting him now.
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She1934, I wish you live close to me and we can chat sometime, thanks to your words (I am in NJ by the way). Yes, all like you are saying and like many of people who answer my post. Thanks for warm hugs and warm words....
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I'd just love to have someone come and let me take a nice long nap.
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You stated "her stubbornness not to eat solid food because of her esophagus that actually lead to aspiration pneumonia." Honey, she probably can't swallow anymore not that she won't. I doubt her not eating solid food was done deliberately. It sounds like she is getting to the end of her life.

I recommend you get some counseling, to help you through this time.

Also, remember that when you married your husband most ceremonies say, "Forsaking all others", and the bible says "A man will leave his father and mother and the two will become one flesh". Your husband has a right to a have a healthy loving wife. Not that you have to abandon your mother, counseling may help you strike a balance in your life that seems to be lacking.
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She1934: maybe next visit, daughter can board the dogs, bring lunch and come and visit with dad while you spend three hours getting a spa treatment.
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Dear Poetry21: and by the way, I love your screen name. I hope that means that you do write, have written, or just love poetry like myself. Your post touched so much in me, though I am a 24/7 caregiver for my husband. It saddens me that your husband feels that your mother stole 15 years of HIS life. But I beg you not to feel guilty about family members not visiting your mom, nor should you feel guilty if you give yourself a break by visiting only enough to check on her care and to give her a hug now and then. She honestly will not remember how often or how long your visits are and it is clear that you have done what you can. I totally agree with you about the whole "live your life" advice. I cannot find time for anything but caring for him and taking to to Dr. Appointments while needing to cancel my own. I have received two grants for respite care, but at an average rate of $24-37 per hour, this grant money, which is a one time only grant, even from the Alzheimer's Assoc., will be up in Sept. ( you have to use it all in 6 months.) when his daughter does come-2x a month for three hours complete with two Australian shepherspds, I fix a nice lunch, then dog sit while she takes dad out for an hour, or sits and visits with him then tells me hoe good he looks and how alert he is. This is a journey that is, no matter what, and at the very least, sad, and at the worst it saps your very life. Some will say not to be so negative because you will mourn when they are gone. But I have been in mourning for three years and I know that the worst is yet to come. But people here do support you and encourage you emotionally, though we cannot help,you physically. Your husband, though he may be loving, is being very selfish in putting this all on you. Be brave, be hopeful, keep a journal and post here always. I send you warm hugs!🌻🌻🌻🐻🐻🐻
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Unfortunately, there is another layer to this issue. I have found that if I do stay away for a day or two I often find problems with my mother's care at the facility when I return. Some have been serious. So when I am trying to take time for myself, I am also worrying that she's not getting good care.
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Unfortunately, there is another layer to this issue. I have found that if I do stay away for a day or two I often find problems with my mother's care at the facility when I return. Some have been serious. So when I am trying to take time for myself, I am also worrying that she's not getting good care.
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Guilt is a strange thing. My mom wasn't close to my sister and me. We saw and heard from her when it was convenient for her. She was always too busy to visit us but traveled for pleasure extensively, visiting and going on trips with old and new friends. She ignored her grandchildren as well. She was a pillar of the community and people often told me how lucky I was to have her as a mother. If they only knew. She even lied to me one time and changed her plans for a family Thanksgiving, telling me she didn't feel right taking off work and would stay and let some one else take off instead. I found out she traveled to see her siblings instead. Our relationship never recovered from the lie. She later admitted that she just didn't want to see my sister and knew I wouldn't care. She now has dementia and is in a full time nursing facility. That sister is an angel to her. Yet we feel guilt.
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First, I know what you mean by not being able to watch Mom like this and yes I have felt guilty for decisions I have made regarding Mom but they were in her best interest. You have to look at this a different way. That your Mom lived a long active life. As my RN daughter says, they live beyond their expiration date. I suggest you get Hospice involved. They will keep Mom comfortable. Please, don't feel guilty. Enjoy the time you have with Mom its time to let her go. I think what helped me was we gave Mom a great send off. I was lucky that a family friend was a Minister and knew our family well, maybe too well. He spoke at her funeral. We laughed and we cried over his words. We did the same at her luncheon. My Dads funeral was like this and so were a few others I have been to. Its so much better to celebrate, I think it helps the grieving process. You have done all you can for Mom. Your husband must love you a lot to have Mom living with u 15 yrs and still be there. Let things take their course and then get on with your life.
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It is easy to say and hard to do, as you say. However, you learned to do a lot of hard things for 15 years, caring for your mom as she approached a new time in her life. Among the things you "learned" was to neglect your husband to some degree (however small, he seems to still resent it).
Now, life has changed again dramatically for you, and that requires a new adjustment.
Do you want your life from here on to be spent in an unreasonable "guilt"-induced pity party? Or in having enjoyment with your husband and family? This doesn't preclude making sure your mom is cared for; but that no longer requires your every minute, since she is in competent, trained hands.
My suggestion is to arrange a mini-vacation with your husband (and kids, if you want). Go camping for 2 or 3 days or to the beach or whatever you enjoyed 16 years ago, and concentrate on making your man happy--he sure deserves it after these last 15 years. Even if you don't want to. You need a new "normal" in your life, and some intentional acts toward a good "normal" can help bring it about.
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Ah Poetry, all of us feel your pain. You cared for your mother for 15 years in your home? Even if she were not a demanding sort of person, that would have been a saintly effort. It sounds as if the guilt you feel may be misplaced. Personally, I have benefitted greatly from seeing a counselor once a week. It gives me someone to talk to about how my parents’ situation makes me feel (other than my husband, who has heard plenty), and it frees the time I spend with my parents to be more focused on their immediate needs and less focused on my own grief at their situation. I know this is hard for you, but sometimes the hardest thing of all is to gain perspective, and my sense is that is what you need right now. Your life is very much worth living, and living it doesn’t necessarily mean seeing your mom any less. Just spend a little bit of it in a place where you can get some support for your own needs, and you may start to feel better sooner than you thought possible. Please stick around this site and let us know how you are doing.
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You simply Do The best you can. I understand the guilt. My sister and I had to make he decision to move mother into a nursing home. Even though I told her I never would. She got to the point of needing around the clock care. I love over an hour away and I have to work. My sister is in bad health but goes and checks on her several times a week. Mother has sever RA, demitia and copd. We can't make her happy. Constantly something. Done real well in the beginning the health is declining fast...all you can do is love her..see her when you can. She is being taken care of..(as long as you keep an eye on things)
Stay strong!
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The other day I realized I was already grieving the loss of my Mother. Her dementia is seeming to get worse. She’s in assisted living so I know she’s cared for but her mind seems far away (especially after 3 pm—she’s daily sundown syndrome).

So I know she’s aware of her declining health and mental capacity. So we’re both grieving really.

Yes I’m going to say it. You need more time with your own family. Try to line up a visitor for the day you don’t come. My husband, daughter and I just try to do fun things together and LAUGH. It feels so good, especially when it’s been months since you got those laughing endorphins circulating. We just watch a silly movie, take a ride around your own community, go out to eat together, exercise (if you’re able), GO SWIMMING (it’s summer) or have quiet time and read.

My daughter attends church, she has people there who help her, give her advice, LOVE her...my husband has friends he jokes with, I have my fit MIL to talk to we’re not the support group type but that can help certain people too.

And go ahead and feel and grieve. It’s normal. I was trying to remember a recipe for liver and onions. My mom always cooked liver and mashed potatoes for my birthday dinner. I couldn’t remember a detail in the recipe and suddenly I burst into weeping, sobbing,...I cannot ask her anymore, she’s forgotten. My husband cried too. This is so hard but it’s life.
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Poetry, the mother you love is reaching the end of her life. You are *allowed* to feel miserable about it. It is extremely sad. Please don't think you owe anybody any apology for how you feel, or that you have to justify what you're doing to cope. Just manage this painful time in the best way you can, and ask those closest to you for understanding. Hugs.
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I second the recommendation to spend time with a counselor. It helps you change unhelpful thinking and feelings. I know firsthand. You are a wonderful daughter and your mother is blessed to have you. It's a different level now. It's time to heal your body, mind and spirit.
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What a wonderful support sight this is. Everyone has covered off everything I was going to say. I too go through all of it with my dad in one way or another, who was diagnosed with mild/moderate Dementia last year. Both my parents led a healthy life right into their late 80’s. My mom physical and motor skills started deteriorating when she was 88. My dad did his best to care for her, and being a mortar doing it; but it was too much for him and I know it took him down too. My mom passed away last year at age 90, on her birthday. She was a registered nurse all her life, and when the doctor said it was time for a feeding tube (she was having trouble swallowing), she said (and I will never forget it)...”that will not be necessary”. Though it pained me dearly, it was her decision and I respected it. I guess I am trying to say that 1) if your mom cannot come off the feeding tube would she want to continue?, and 2) your own health is at risk. Stress brings on many illnesses itself. Med’s continue to help me, but I know that I still have all the feelings you have, just undermined enough to help me unless it is really stressful and then my sleep is interrupted. My dad is on my mind 24/7, and my mom I try not to dwell on. I ask for strength every day; but know the experience has already made me stronger. Life is short, and I have to make sure I live my life with the love of my life - my husband, and my children’s families. I see my dad 2 times/week, and talk to him numerous times a day. He lives independently and says he will never leave his condo. I ensure he has food, medical needs met, support him emotionally, try to help him find the “good” in his day. It is not perfect, but it’s the best balance I can do....for now. 
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Poetry21 - It is easy to say and hard to do. I agree. I'm in the same boat. My dad was this big strong hardworking guy and now when I see him in his wheelchair staring at the floor at the nursing home it breaks my heart each time. I visit too often but can't stop myself and I'm up all night thinking about him. The guilt eats me alive. Hugs to you. You're not alone.
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Poetry...you’ve identified the problem, now you need to seek talk therapy with a counselor to have them help you through this. Why? Because you are telling yourself you are a bad daughter if you don’t visit her daily and you need to find out why. You are letting these feelings control your life and behavior. And guess what? You CAN learn new behaviors and your mom will be fine. Here’s what I think when any little feeling gnaws at me...I think "dad has lived 92 years in good health...he's now 96...he’s getting good care, and it’s ok for me to live my life". I see him once a week on average because I know the stress it causes me. Once you realize your mom will be ok, that you made it through without seeing her, it will be a relief. If you died tomorrow you would not be visiting and then what?
 I just got back from a 4 days trip with my husband and it did us both a world of good. You must nurture your marriage and your soul. You matter and are important. That’s why I think a good therapist can help you prioritize and see value in you! When I came home dad got pneumonia and was hospitalized for 2 days. Yesterday I almost drove over to the hospital bring him a baggie of Cheerios for breakfast...but stopped myself. I needed to practice my harp and then go to my yoga class. I saw him after yoga and met with the doctor and you know...he was fine without the Cheerios. I set boundaries...did things that "fed" my soul first and then saw him. Now I don’t feel so depleted or cheated. Hope this is helpful
On another note did your mom have an advanced directive? And a DNR? My dad doesn’t want artificial means of feeding...did your mom?
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Hi Poetry, freqflyer and wally...


Poetry... I know it is hard, but you have to step back even if just for a short time to find yourself and renew your relationship with your husband...don't feel guilty, you have given 15 years and by stepping back you are not actually stopping seeing your Mom...just taking a break to get a deep breath. Let the nurses know and tell them to contact you should you be needed. Otherwise you are going to take a break. You have to find time for YOU and your family.

Freqflyer...I agree taking care of a loved one can take years off. My hair turns more silver every year and I find more lines/wrinkles each year as well. I won't color my hair as I tell people I earned every silver hair I have....ha, ha, ha. Seriously I was guilty of not taking time for myself and letting myself and my health go. Not any more. If I am not in decent shape I am no good to myself or my honey..so taking time out for ME is worth it.

Walley, I am a worrier too. Talked to my doctor about it and found out it is a symptom of anxiety and panic attacks. Doctor put me on med for it and the worrying has eased. Now I don't wake up in the middle of the night worried about it. You might want to check with your doctor. Sure helped me.

Y'all hang in there (know I say that a lot but is true) in this adventure that we are involved in called caregiving. You are not alone
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omg I sorry to hear about that. you are trying to be wonder woman. I wonder why we each put so much pressure on ourselves? why we feel responsible for things we have no control over. you are dealing with a lot right now/recently. I hope you feel better soon.
im a big worrier and get stuck worrying at 3am. recently something had me upset and so I was SO stressed in middle of night. woke up with a stiff neck. and I guess a BAD pinched nerve in my shoulder blade. the pain went down my arm (no wasn't heart attack) but the PAIN lasted all day and all night for 3 weeks. I finally got it to go away. but I sorta made me think. my worrying really changed nothing. and I ended up hurting for 3 weeks. ~I just hope in the future~. I can accept things I cant change, and stop making up things in my head that may or may not even happen.

I replay negative things over and over in my head. so I try to practice more positive thoughts.
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Thank you Wally and freqflyer, I hear you both, I forgot to add that this year I was a breast cancer patient and along with dealing with my mom dementia and her stubbornness not to eat solid food because of her esophagus that actually lead to aspiration pneumonia, I was fighting with chemo, surgery and radiation. And now this. I know that I should be happy that she at least have some help in a facility but when I think that I can not anymore bring her home, I start crying, probably need also some anti anxiety medications. but thank you for your help.
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everyone has their limits. if you feel you are at your limit where you are suffering too, then you need to stop and think again about yourself. and that is OK. if she is being cared for, then take a break for yourself. yes I know its hard if you are the only one being in charge. you say she lived with you for 15 years? you have done the best you could. and give yourself a ton of credit. its no fun watching someone slowly deteriate in front of your eyes. so the staff at the rehab are not as emotionally attached and they care for your mom best. go visit to be sure they ARE doing their job. but don't feel like you aren't doing enough. I know its easier said than done, but this is a process and each stage of aging parents(or any family member) is an adjustment time.
I know with my mom and dementia if she keeps on going, is going to get worse and I have to prepare for what I think is coming....
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Poetry, I know it isn't easy not to feel guilty, but you didn't cause your Mom to be 90 years old with normal health related issues for someone at that age, our body parts do wear out. Also, you didn't cause her dementia. We all go through the "what ifs", it's normal.

Your Mom is in the best place possible for her care. I know it isn't home, but now she is at a point where it can take a village to take care of her.

Yes, taking care of one's aging parents can take many years off one's life. I look in the mirror and I see how I had aged big time. Now I do look matronly, which there isn't any wrong with that, but I was a gym rat prior to taking care of my parents. My gym bag was tossed out years ago.

My Dad surprised us with aspiration pneumonia, I just thought he had his regular allergy type cough. Dad's Medical Directive indicated he wanted no feeding tubes for such issues, so I went along with his wishes. Dad was placed in Hospice. I knew he wanted to be reunited with the love of his life, my Mom. It was bitter sweet.
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