Why won't she go and am I terrible for wanting it to end?

MomMandI OMG I read what your saying and so many others. My Mom came to me from an Assisted Living, she was so ill and thought she only had a few months to live. I and my husband wanted her with us. That was almost 3 years ago. She has been doing so much better. She is easy to care for, from bed to TV room BIG 70 inch screen, feed her, bathe her and bathroom assistance. She is very content and has not been sick. Now, I am tired of having my life on hold. We are supposed to be enjoying our time together and doing a little traveling. No other of her children will help. I feel guilty to place her in a Place for Mom but I feel like I am now waiting for either her to die or me. I have gotten relief from Adult Day Care for about 5 months ago but now feel like I am on probation. I can only leave between 9-4 weekdays. No nights or weekends. I shouldn't complain, but I just want some retirement time with my husband.

rltaunton - I am glad you are looking after yourself. We all need a life that sustains us. It is better for everyone. This has been my choice with mother.

georgia -To be clear, I don't do hands on caregiving and never have. Mother is in an nh.
Re "They say those that are caretakers of patients with dementia or alzheimer's will be the next one who will get those diseases." I don't plan on joining that crowd, or rather will do what I can to prevent it. The stress of caregiving can bring on all kinds of diseases. Both parents had high blood -pressure, which is a major factor in developing VaD, and they had a contentious relationship. Mine is not high and I continually work on keeping a balanced lifestyle and resolution of any issues with people close to me.
I, myself, have CFS/FM which ties me down somewhat, but otherwise am healthy.

Your sis sure hung in there. I understand the feeling of a blessed release for them.
I think Mexico is on the bucket list. Mother, herself, travelled up to her 90s.

God bless you. I can't imagine at your age you are still able to care for your Mother. They say those that are caretakers of patients with dementia or alzheimers will be the next one who will get those diseases.

My sister kept hanging on too. The doctors would say I can't believe she's still a live. She had a massive heart attack at age 45, triple by-pass, had less than 12% chance of survival. She had a second by-pass at 55 came through it with flying colors. She had 3 strokes, lung cancer, & diabetes. She went through chemo for the lung cancer. She developed vascular dementia from the strokes. My brother-in-law cared for her for 11 years til he was forced to put her in a nursing home. She was mean before she got the dementia but after she was paranoid accused everyone from stealing from her, etc. And only got meaner. Cussed her husband & her daughter terribly. She would say she wanted to die but just kept hanging on. Finally at age 75 she passed away. I have to say her passing was so much easier on me than I expected. It was because the meaner she got the more I wanted her to find some peace by dying.

My heart goes out to you. Go to Mexico & enjoy yourself!

My husband is 92--has fronto-temporal dementia. Two years ago at age 76 I decided that I did not work 48 years to spend the last years of my retirement tired, stressed out, and on a first-responder leash. I found a really good care facility and took him there. It helped that years ago he told me, "If I ever have Alzheimer's, don't kill yourself taking care of me." (He thought his sister died prematurely due to the stress of caregiving for her husband, who lived several more years through the terminal stages of Alzheimer's.) I thought leaving my beloved husband at the care facility was the hardest thing I had ever done, but watching him lose himself inch by inch actually seems harder. However, my goal is to walk through this journey with him, and I think I'm going to be able to do that because I took back a life for myself that is sustaining. Giving up the responsibility of his 24 hour care and the release from the weight of being the first responder for every glich in his home care and emerging health care issues helps me. Now I am engaged with him and his care providers and am able to renew my energy and protect my own heath. He's also a tough old bird. This way I think I can stay the course with him and assure that his needs are met.

dkentz72: if your mom is in a nursing home or assisted facility ,then you should report to the Health Department for negligence! The home should look after her well.It is useless blaming your sibling.

If your Mom can make decisions, and if she has no dementia,then you ask her whether she wants to have treatment for her aortic stenosis.
I think there are minimally invasive surgical techniques (plasty)available for this condition. You can discuss with the cardiologist.She will probably have better quality of life too. Likewise, if treatment fails she will die.

This is a situation we have or will have to face in our lives.

My Mother is 85 yrs young, lives in my home State which is about a 12 hr drive.

Mom took care of her Mother for a little more than 2 yrs. She didn't want Grandma to be placed in a nursing home.

Mom became very stressed, tired and every other emotion one experiences taking care of an elderly family member.

Thankfully, Mom's younger brother finally told Mom that it was time to place Grandma in a living assistance facility.....really nice as Grandma had made really great investments.

Now the shoe is on the other foot; Mom is in need of the same care she gave her Mother for as long as she could.

I haven't seen my Mother in about a year. When I did go home to see her, it was for a few reasons; most important was just to visit and see how she was doing because she had been in the hospital the entire month prior to my trip.

The day I went to the house no one was there so I tried to locate her and my step-father only to have the rather brazen neighbor come home and approach me like I did not have any business there. He realized who I was when I curtly asked him where Mom was, only to be told she was back in the hospital since 6:00 AM and I never received a call or text from my older sibling.

This older sibling who has all agencies believing she's Mom's 24/7 caregiver....she complains that she is under so much stress working and having to care for Mom.

Fast forward to this past week. Our daughter went back home to visit with former co-workers at the hospital where she had worked as an RN.

She visited with her grandmother the last day of her vacation. I am shocked and appalled with the conditions Mom is living, her physical condition. Our daughter documented everything to help me fight my sibling should I need to go to Court.

I finally reported elderly abuse with APS. I tried to do so after I came back from my visit last year, but I felt guilty and knew my sibling would know that I was the person who reported.

Our daughter found Mom with bed bugs crawling on her. They're so large she thought they were baby cockroaches. Mom's hair is matted so bad, that I would need to take her to a dog groomer to cut the mats.

Daughter said she couldn't tell how long Mom had been wearing the night shirt she had on, the last time she had a shower, crud under her nails (which some were long or broken) that one could not tell what was under them; daughter feels that it was most likely feces. Mom is incontinent. How long Mom had been wearing the adult diaper and she COULDN'T find Mom's insulin etc.

Right now I do not have control of the situation, BUT I have learned many things that are available for me to use to help Mom and my step-father.

Google for State help for the elderly. In my home State it is called Area Agency.

They have so many services available to help you. These services maybe available at no cost or a possible nominal cost.

Some of the services are in-home care, making sure medications are being taken as they should, bathing the elder, shopping, house keeping, laundry and legal help if needed.

The APS dept told me of this service since I live out of State.

My filing report of elderly abuse qualified for investigation. Should their evaluation, which I'm 99.9999% sure it will; my sibling could be arrested for abuse which is fine with me, it truly is.

APS will determine if Mom needs a guardian/conservator, start the process to do so and ask if a family member is willing to take this responsibility....even though I live out of State I can accept and will do so. I will have the help of several State agencies to help me care for Mom, get my sibling out of the house and holding her responsible.

I will not have to go to the Courts on my own to get this done, so I won't have to inform my other siblings as the State is making the decision.

Again, check for this Area Agency in your County for help. You will be able to get respite for yourself. They will work a schedule with you.

You don't have to do this on your own so you won't have frustration, stress and guilt wanting for it to end.

I hope this has helped you and any others posting who feel the same way.

I know it's hard, but you still have your Mother for now. Try to remember the good times and the love she has for you. Hug her and tell her how much you love her because I would not want you to feel guilty that you should not have wished that once she is gone.

It’s up to God when it’s your time to go, so why not enjoy your loved ones while they are still with us? I too wanted a break and put my life on hold but the Lord had other plans and I’m glad he did because I learned many valuable lessons. Momma always said be careful what you wish for.

You know, we all have heard someone say and I've said it hundreds of times, "Life isn't fair" and boy is that true...Shortly after my husband was diagnosed with dementia, we lost one of our sons from complications from heart surgery and it really hit me as "not being fair"...Even my husband, at the time, said, why wasn't it me, I'm old, I've lived my life but our son was only 57 and had so much to live for...And again, "just not fair"...But now, it's been 3 years and hubby is slipping almost weekly and you start to wonder..He has fallen and has been hospitalized (nothing broken) but I've sat at his bed and actually prayed that he would just sleep away...I know he doesn't want to live like this, he had said so many times, he's ready but I guess the Good Lord just isn't ready for him...This last time he was in the ER, they were going to put him through tests to determine if he had had a stroke and just the thought of them doing this, I refused...I figure, they can't "put him back they way he was years ago" so why put him through more confusion...I might sound cold hearted but after you've been with someone for 63 years, you know what they'd want done....But, you do have to take care of yourself and you also have to live.....Just know, you're not alone, Hugs....

I'm going to be the odd man out....My mother is gone and I used to wonder what kept her going for so long. She had all the maladies and sometimes hated being alive. Caregiving was hard and I sacrificed much for all the years that she was alive and living with me, but in the end, I wish I would have had more time. You can never get it back. Yes it was, and could be frustrating, and there were days when I so wanted something different. Looking back, I wish I would have just lived in the moment. Slowed down and just enjoyed the time. It seemed like, at the time, that it drug on forever, but it finally did come to an end. Now, I can no longer see her beautiful brown eyes, or hear her ask me what kind of trouble are we going to get in today, and I miss all of those times, no matter how hard they might have been, or how frustrated I was. Now I am free to have my life, and I must admit, it isn't so different now that she has passed. The world keeps turning, people and problems are still the same, and I find myself saying I would like to do this and that, I should do this and that, but even without her here I find those things still tend to go undone. Fact is that now, I have no one else to blame it on. I think it might be all in the perspective.

My sister-in-law was born with severe spina bifida and is now age 76. She allowed pressure wounds to develop last year and the wound doc said she cannot be healed. Hospice started September 11 with a prognosis of two to three weeks. We are now mid February. Since September a family member has been here with 24/7 caregivers. I am the main person. She is in her own home which gives her comfort. I live 4 hours away so my life is on hold until she passes. We cannot figure out how she is surviving with massive wounds on back and buttocks. I know it is all in God’s time..... stay strong

Golden,
GO! Spend the winters in Mexico. Live for yourself and your partner.

I had the same dilemma but in younger years. My 84 year old dad was in a board and care. I did everything for him. He had mini strokes (TIA's) and was an active alcoholic. His short term memory was shot but he didn't seem to have dementia. He kept drinking.

He didn't care that he drank all my childhood and always put his desires first.

In my early 50's I had the opportunity to move to Puerto Vallarta, Mexico.
My fiancé lived there. He didn't have a Visa to come to the US to live with me. I had a job I didn't like, so I thought about about moving down south. But what about my dad?

I had to ask myself what would HE do. He would have gone. He wouldn't have thought of or considered anyone else. So that's what I based my decision on. I talked with the board and care lady who reassured me it would be ok. I had a telephone calling plan to call anywhere in the world and talk unlimited time for $35./mo. so I could talk to him any time. I would come home every 6 months to visit and check on him.

Because of what he showed me growing up, I put myself first and moved to Mexico and enjoyed my life. If I hadn't, my (now) husband would have died and would have never become my "other half". (Long story for another time.)

Yes, I felt guilty about leaving dad (especially since I'm the only child) but I was in menopause (I've blamed everything on that!) and thought it was MY turn. I had lived with a chronically depressed husband for 30 years, raised a son, taken care of my dad and now it was my time.

When my 95 year old mom passes and I retire in 4 more years, I'll be back on those beaches, sipping my Margarita, watching the Pelicans fly overhead and living the good life once again.

For me, this is a pit stop on the road to happiness.
I think mom will be in Heaven by the time I retire. Then we'll move. If not, I guess we'll be here in Tijuana until she passes.

She's miserable being so old and tells me every visit that she wants to die.
I hope she passes quietly in her sleep. This is no life for her at stage 6 Alzheimer's in a memory care facility.

Do it Golden, while you can. Enjoy your life while you have it. She'll be OK.
We never know when our time comes. You don't want your last words to be, "I wish I'd done that."

My "mantra" at that time (still is) is a quote from Mark Twain, 
"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore, Dream, Discover."

Nebbish1964, I would ask my mom if I just showed up and said here I am your daughter or did she and daddy have any culpability in my existence? Talk about guilt trip, did you pack your luggage for that trip? Sorry if that offends anyone, I have parents that act like I just rudely walk in one day and here I am, so I tend to be a bit of a smart a** when I hear similar guilt trips but as I always say, better n being a dumb one😁

Somewhere inside of her , there is a will to live or a stronger fear of dying. I am in a similar situation where I wait daily for the proverbial " other shoe to drop " regarding a situation involving the possibility of my mother being evicted from her apartment. The stress in horrible. My advice to you , if you are not already doing so, try to do some form of exercise or workout to combat some of the stress. Concerning you mom's impending death ( which seems won't happen) try to emotionally detach. YOU ARE NOT A BAD PERSON FOR WANTING THE TORTURE TO END.

Golden I feel for you. My Dad is 84 and in better health than I am. I am so stressed out and have no life due to worry and anxiety. My family doesn't even speak to me. I have part time caregivers. I am POA and I love my Dad but I can't give him the quality of life he deserves because I have none. It is killing us. I took care of my Mom who had MS for 40 years and wheelchair bound she passed away 6 years ago. My first husband died at age 42 and I took care of him and worked 3 jobs. I'm so tired and can't get help that is affordable. I'm at the point I can't even think right. So I do feel your pain. I worked in a nursing home for 15 years and did private duty care on the side. It's not the same when it is your family. You care for those you take care of but the emotional stress is not there. Don't feel bad for the way you feel. I get angry because my life has been taken away and I suffer from depression and anxiety and end stage copd. I am thinking of you and hope you can get some help. Big Hugs

My 94 year old Mom is as healthy as a horse. Except for her mind. I have been her POA for about five years now. And while she is doing well, I still, at 75, with my own health issues, have been taking care of her finances and assisted living conditions for all this time. My dealings with her have been soooo up and down, that I, too, wonder when it will all end. And, hope that it'll end soon. I don't think that you are terrible for thinking that way as well. You are only human. No one is a saint when it comes to attending our elders. We all have those thoughts, no matter if we admit to them or not. What makes it worse for me, as her daughter is that my Mom feels that I am supposed to take care of her. Just because I'm the daughter. Go figure. Mom even told me that I asked for it. Meaning .... because I was her daughter, I had the responsibility to take care of her. Oh my.....Hugs to you and all who deal with and deal with and deal with all of this.

You are not terrible! You recognize that your mother's quality of life is poor. I think respite care is a good idea. Peace.

In the last six months (Dad is 96) I have pulled away. I am a distance caregiver, though, not dealing with day-to-day (except phone calls, care coordination, paperworks, social work). I so try to phone a few times a week, which used to be daily. I can't. Spent. My own life in ruins. My own husband (actually a 40-year partner), maybe not as longed lived as Dad. My Dad's visiting physician has a DNR for Dad, as is in his Medical POA. Yet, medications seem to keep him alive and his organs and vitals are better than my own. I always wonder why DNR doesn't include DNRX. I love my father, I really do. But I can't deal with it. I deal hourly with it. But that person on the other side of the phone, it's like nail against chalkboard because he's demented yet he has true deep memory and emotion. You do not want to betray or or denigrate your personal sense of decency. Yet decency, in certain situations, becomes something else. There is a golden glow of "deeper" in the early years of caregiving. Then a sense of caring for someone dying so very slowly, creeps in. It's only natural to not want to see this. To not want to participate. All I can do is ask "why. I am lucky because I can hire a caregiver. Were I not in a very close relationship with another, I'd be there hands on, killing myself. No golden crown for me.

MomMandl: I implore you to give your question to HIM, Our Heavenly Savior.

I think here everyone feels everyones pain and can relate. Thank God for this wonderful web site to let it all out with all of you caring people out there, who understand. We all need each other.

If you don't have any family that can help, can you afford to hire someone even once a month to care for her so you do something for yourself? Go to movie, dinner with a friend. My heart goes out to you and your mom. Sending you both prayers.

Wow MomMandl... I can imagine how you must feel. When things are bad with my mom, I wonder how long it can continue. Sometimes there is something that keeps them here -- like they are afraid someone is not going to be taken care of. I think my mom will continue to worry about my sister (who has MS). The mother of a friend of mine hung on way too long, worrying that my friend would not have a place to live if she died. She had to be reassured and told it was okay to go. In listening to everyone else here whose parents are in their upper 90s - 100s, I cannot imagine what my life will be like if that is my mom. She is 94... I love her, but she is no longer living the life she lived even 2 years ago. It is becoming more and more of a challenge. How can she live much longer(???)... But, right now, mom's organs just keep working.... And, until she either has a massive stroke or a heart attack, I doubt that she will go anywhere anytime soon... Where is the crystal ball???

"When it's his/her time to go, you'll be glad you shared their last years..." I doubt if that's true, but it makes the one caregiving appear noble. Personally, I want to live my life, but I can't, and I don't like it. But I'm nice. So I don't tell anyone how I really feel except my BFF!!

I am feeling you completely! My mom is 102 in last stage of dementia. She fell in December and broke her femur. She not only came through surgery with flying colors but was only in the hospital for 5 days. Returned to the hospital in January for another 5 days with bronchial and urinary track infection. Was not expected to live through this yet came back home after 5 days. Now in hospice care with originally diagnosis of a few days to a few weeks to live. Five weeks later she is awake, alert, and sitting up in her wheelchair. This diagnosis of pending death that doesn't happen is agonizing! In addition to the dementia (she has no memory of any of her family or past life) she is blind from immacular degeneration and totally deaf. I don't get it either. The doctor at the hospital said she is a medical wonder. Full blowen infection in her body yet normal white blood cell count. He just attributes it to genes. I do understand she will go eventually but I know she never wanted this for herself or for her children. I too have gained a lot of weight in the last year and can see the stress in my life play out. For my own sanity and health I had to hand the care over to hospice and go live my life. I used to think I felt guilty and now I realize I just feel really sad.

You are not terrible. But be careful what you wish/ask for. My mom, was 89 had high blood pressure, thyroid, painful and debilitating arthritis, and dementia. She rarely complained. After 7 1/2 years of care giving, mom died 2 Feb 2018. While I know and believe that she is now in perfect health and in heaven reunited with loved ones, missing her is so much harder than I thought. Love your mom, hold her hand, give her hugs and kisses. She will go in her time.

No. You're not terrible. You're tired and stressed out. You've 'hit the wall.'
I saw my niece go through this with her ex-MIL.

You need respite care at least part of the time.

My Mom had Alzheimer's and her last 5 months of life she was pretty miserable. I too felt guilty for wanting it all to stop. Part of that was selfish - me wanting the stress it put me under to be gone - but I know part of that desire wasn't selfish at all. I wanted my Mom to be out of pain, to be at peace. These feelings are simply human. Just love her the best you can. Love to you both.

golden23--I almost wept when I read your post. I'm only 64. I'm an only child. My mom, who will be 93 in March, is in a memory care unit. I have no idea what kind of dementia she has or what stage she is in. Last November I took out a loan to keep her in the AL facility (private pay) for a couple more months, which pushed my retirement plans back two years. I've closed her savings account, cashed in her IRA, am now hoping to sell some jewelry and that she gets a tax refund. I'm worried about money. She has told me she's content where she's living, and I hate the thought of having to move her again because we can't afford it any longer. I've gone on anti-anxiety medication and am back in therapy. I know I'll miss my mom when she goes, but I just want it to be over. I visit her almost every Saturday and Sunday, and sometimes one night a week after work. I'm so tired all the time. My mom has outlived her husband, siblings, and most of her relatives and friends. Yet the other week she told me she wasn't ready to go yet; she had too much to do. I asked her what she had to do and she told me she didn't want to die because she wanted to spend time with me and "pussycat" (a fake cat my cousin sent to her--she thinks it's real. Long story.) I said, "You know you'll be able to see me no matter where you are, right?" And she nodded. Aside from her mind, in general, she seems to be relatively healthy.

MomandI, you are not awful for wanting her suffering to be over. Be kind to yourself and don't be beating yourself up for having normal human feelings. To much is just that, I can't imagine what you have been going through living 3 years on death watch. Could it be time to put mom in a facility? I'm thinking the doctor wasn't the cleverest fellow and may have acted hastily, putting you thru 3 years of living nightmare. If you chose to place her, you would have no reason to feel guilt or regret, you have done a goliath job that no one envied you for. Maybe mom doesn't want to go in your home, for what ever reason, so if you place her and she goes quickly know it was probably that she wanted to spare you that experience. I have heard people beating themselves to insanity because of this scenario and never once looking at it as a gift from their loved one because of above. Hugs and love to you in this most trying of trials.

I had a friend with type 2 diabetes that required daily medication. When he also developed COPD and they told him to quit smoking, he instead quit taken his diabetes meds, went into diabetic coma and died in his sleep. I have sometimes wished that I had type 2 diabetes so that I could have that option out if I become a burden on my children (who are right now caring for my ex, their father in nursing home). I know they wish their dad would go peacefully into that good night! But my daughter is so dutiful she brings his dog to visit him every day.