I feel helpless, guilty, and frankly just a mess. For those of you who have felt like this, have you found a way to get grounded?

I hear similar from both my parents recently. I went home for a week to relieve my brother and take care of some legal matters and my father refused to eat or drink. He said he fully expected to die before my mother. he is 82, mom is 79 and has moderate to late stage dementia and she refuses to take her medications. In one of her more lucid moments she told me God keeps calling her and her mother said it was close to her time to join her. So what do you say? Not much you can say. So it was collectively decided that if Mom doesn't want to take her meds we aren't making her or pitching a fit about it. Pushing dad I found out his dentures are worn out and it is difficult for him to chew food, so I am now working on getting him set up for an appointment to get them replaced. I live 600 miles away but do what I can. My brother lives there but does little with the medical or financial matters. He cooks, cleans and chauffeurs. Bottom line is that you do what you can to help make them as comfortable as you can but don't feel guilty. No one with a heart can watch their parent go through such horrible illnesses without wishing they could make it better or at times wishing the fight would be over so they wouldn't be suffering any longer. My grandmother complained her last 5 years she didn't want to be alive that long and wished it would be over and done with. She died at 93 with mid stage dementia as well. Some days I hope my mom goes peacefully in her sleep before she completely forgets who everyone is, but I sure am gonna miss her. Dad feels like a burden and wishes he hadn't survived his stroke 12 years ago. Sometimes I want to shake him and tell him how ridiculous he is being but he is tired and I get that too. Its also killing him to see my mom going through these stages of losing her mind. Heartbreaking to watch and yes, feeling so helpless, but I remind myself none of this is their fault, nor is it mine and in the time remaining we will all just do the best we can. Blessings to you and I hope you find a way to come to terms and have peace in your situation. Its a process everyone goes through at one point or another and everyone handles it differently.

My mom also would say she was bored & wanted to go out but never would - we found out later why she wore skirts - as well she went commando so she could get to toilet fast as she would have sudden urges - while not fully incontinent she was partially so - this lead to her getting anxious about leaving home - so it became 'where's the nearest bathroom?' when she went out - maybe your mom is same

Take her to a dr in case she has an UTI - notice I said 'take' not ask her - help her get dressed & say you have DEPENDS if she wants them - if she refuses then say you'll call 911 have the ambulance take her & do it - she might get ready then

As to saying she wants to die - agree that will happen [WHICH IT WILL] but that rather she should try to maximize quality of life while she is here - also say 'I'll miss you when the time comes'

DO NOT FEEL GUILTY unless you have done something WRONG - you're not doing something wrong when you don't do what she asks if that is not appropriate - look yourself in mirror everyday & say 'I'm doing my best & can do nothing more than I am right now' - after a while the burden on your shoulders should lessen - positive thinking is the best way to go so every time you think 'I am bad', 'I am not good enough' etc pull yourself up & say you yourself 'STOP THIS NEGATIVE WAY ...... I am woman see me roar' play Helen Redding's song in your head while you stand straight & walk with confidence because you are doing your best - your new more positive attitude may become infectious to her ... you never know! - good luck

well just reading all, well most these replies the only real comfort is knowing your not alone! i too am experiencing all these issues and the only thing that helps me is time out. try to make respite care a regular thing.

I envy you. I have a live in mother who is mean and abusive and always has been and it's not senility, she the same bully who used to beat the other kids up on her block in Brooklyn. I thought I could do this because she's old and sick. She's wants to outlive me!!!! Toxic family, even with my siblings, who she gangs up with against me, her caregiver!! I have to threaten my brothers and my rotten sister in laws to cut it out or else I am calling social service and then say goodbye to all her money but it still doesn't stop, so I am calling today, before this family makes me completely crazy or I wind up in the hospital!!!!

You are not alone. My mom is 81 and lives two states away. We lost my younger brother in 2007 due to cancer, but we were healing over this. Then, last July, we suddenly lost my older brother who lived in the same town as her. This has been too much and she said she will never get over this. She has suffered from depression and sleep deprivation for years. She also lost one of her dogs suddenly a few months ago. She has bee thru h*ll. We begged her to come and live with us some years ago but she adamantly refused. She is a very negative person so always looking at glass half empty. She has real bad short term memory and when I talk to her it is just the same record that plays over and over in her head. You can't convince her of anything once she gets something in her head. She refuses a retirement home and last Christmas I had a nurse from a senior home service come over to talk to her. She is also refusing any help in her home and has friends but always finds an excuse not to leave the house. She doesn't seem to see my pain; that I've lost both of my brothers and feel so alone now. She is all I have left of my family so I am grieving too. I worry so much about her but she could have had a better life right now if she would have tried to make things better. I get so down after talking to her as she just goes over and over the same things and can't remember anything. She snaps at me all the time and yells at me if I suggest something. We have always been super close so this is really hard. I know I am not alone, but it is hard. I think we just have to do our best but also realize our health and lives are important too.

Thank you all for your answers. I'm going through something similar with my mother. She lives in a nice senior building where neighbors knocked on her door to introduce themselves. There are two senior centers directly downstairs with programing every day and some evenings. But she complains she is lonely and is not leaning on us to come sit with her. We were just there Saturday and she called today, Monday saying she's lonesome. I visit her three times a week, my daughter at least once. She's in a wheelchair most of the time, but as day and night access to aides who come daily. She won't make friends, just focuses on her arthritic pain and watches t.v. all day. My siblings live in another state. I put a special ring on my phone and when she calls, I get so much anxiety.

Why is it considered abnormal when a very ill, terminal person voices a desire to die?

Shar7222, I am so sorry you are going through this. Been there. This post sounds like you are describing my mom: she didn't want to eat, go out, she wanted to die, slept all day. My mom was depressed and had the beginnings of dementia. My mom had a stroke 7 years ago and my spunky, take control mom was no longer there. She became more like a child. My sister and I were her caretakers after her stroke, taking one year intervals.. We lived in separate states with no other family around for support so it made it very difficult. What I am trying to say to you is please, please, please enjoy your mom in whatever form she is in: alive. My mom passed 10 months ago and my life has come to a halt. How I miss seeing her or just talking to her about anything even if she didn't understand half the time. I wish I could still hold her and hug her and tell her I love her. I know this is selfish on my end because she had no quality of life. The guilt of wishing I could have done more, said more, not lose my temper, be more patient..... This I will have to live with for the rest of my life. Things that used to be important are no longer important. You only have one mama, once she is gone, she is gone. I feel like an orphaned child at the age of 52. Oh, how I miss her. Please tell her you love her every day and spend all the time you can with her. This may sound difficult, as it did when we were in the eye of the storm. Believe me, the advice I'm giving you I also received. I don't think anyone ever thinks they did enough. I hope this helps. Sending lots of hugs your way.

Shar7222, this sounds like our mom. Your mom probably has a little dementia and is depressed. This was my mom you are writing about. Please, Please, Please listen to what I'm about to tell you: I wish I would have spent more time with my mom. She also wanted to die for years, wanted to be alone, didn't want to go out, didn't want to eat.... just waiting to die. She slept all day and was restless at night when we were all exhausted and sleeping. My mom passed away 10 months ago. The guilt of not doing more is killing me. My sister and I were my mom's caretaker and we promised her we would never put her in a nursing home. So happy we kept our promise. My sister and I live in different states so we had no one to help us. We took turns watching her in one year intervals until she was too sick to travel. I know we are human and could do no more, but I wish I could hold her and just sit with her and tell her I love her again. When they are gone, they are gone. I know we were told the same thing when we cried out for help and suggestions. Going through it, it has left us blah. Nothing has as much joy as it used to. I don't know if life will ever be the same again. Enjoy her while you have her. Mama is mama and she is irreplaceable. I hope this helps you. Sending lots and lots of hugs to you.

My mom passed in November at the age of 95. She suffered from severe dementia. In addition, she had always been a "drama queen" and this was intensified by her mental issues. She was the master of one sentence "quick shots", leaving the recipient of her words to deal with what she'd said. That recipient was usually me. I came to understand that, as one who had always been "in charge" she was certainly bound to rebel against the turn her life had taken. She took it out on the only one she could, me. It wasn't easy, but I came to terms with this by being in constant contact with the staff at her nursing home. I worked "behind the scenes" for her. I explained to the staff that she had no chachkees from home in her room because she didn't want them, not because I didn't want to bring them to her. I ran defense for myself. As long as she was safe and well-cared for, I was able to take care of myself. There was never any question of whether I loved her or not. I had to make peace with myself, and I believe this is what you need to do as well. Good luck!

Seek out a class in mindfulness/meditation. Look locally, go online or find a book on the subject. If practiced regularly it will make a huge difference in how YOU feel. Very inexpensive.

Shar -- Pamstegma is right that after age 80, every day is a gift. As someone who will soon be 86, my perspective is that every day is a gift as long as I can continue some of the things that make me myself, like expressing myself in writing to my friends. If I develop dementia, or develop constant pain, I hope I will die in my sleep. When my husband was confined to bed in a nursing home he told me that if I couldn't take him home to live, he wanted to die. I refused, because I couldn't care for him at home again without destroying myself. He died in his sleep a week later.

If she is refusing her medication and will not see a doctor, perhaps it is time to call an ambulance and get her hospitalized because she has to take her medications and if she stays in bed all the time you will eventually not be able to get her up. Being bed bound is serious and you will not be able to take her to a doctor and someone will have to change her diapers around the clock. Perhaps a doctor can evaluate her in the hospital--if she is still able to make her own decisions and her physical condition is so deteriorated you may want to consider making her a Do Not Resuscitate and put her in hospice care. A person does have the right to refuse treatment..but if I were in your situation I would get her to hospital.

I took care of Tom at home. With Parkinson's he was cooperative. But when dementia set in, he got argumentative, ran out of the house in shorts & T-shirt, dragging his catheter bag behind him. He's in a nursing home now. Most of the time he's sweet and so sad. I feel bad I can't often cheer him up. Sometimes we have a really good day and I'm thankful, but always apprehensive about future visits. Sometimes I come home and just let out a blood-curdling scream. It seems to help. I see him every day for at least 3 hours. I pack us a picnic. I have no life of my own any more. Partly because I'm handicapped too. With my severe arthritis, I can no longer walk. I have a motorized handicap scooter. I recommend my scream therapy.

Dear Shar,

I'm so sorry to hear about what you have been going through. I know its a lot. You love your mom but its also very tiring when everything you try to do is rebuffed.

Your mom sounds like my dad. In the last year of his life, he refused his meds, showers, grumpy in general. Then he started eating and drinking less. I didn't know this but he had heart failure. I have to agree with Pam and John, maybe your mom doesn't has much time left. I would try having a heart to heart talk with her if possible. And for yourself consider talking to a counselor or joining a support group. Its overwhelming as your mom's primary caregiver. There is a lot on your shoulders. I know I struggled and in hindsight, I wished I got my dad to the sooner. Even if your mom fights and is grumpy, I would just take her.

Take care. Thinking of you.

Even though you think right now there is no end in sight, I am here to tell you that indeed there is. Enjoy every second with your LO in the here and now!

Hi Shar. We all know what You are feeling since We have been there too, but You must Live in the moment and concentrate on the here and now. Do not blame Mom for not cooperating at times as if the role were turned We would feel the same as Your dear Mom. Enjoy that time You have left with Your Mom because believe me it will all be over much too soon.

My mom acted much in a similar manner. Hers may very well have been depression following the death of my dad. Also dementia was starting to show signs with her. She fell a year ago, and has been in a nursing home ever since. It sounds like it may be time to talk to your moms physician. Maybe getting some help to come into the house? Hopefully her physician will help with these difficult decisions, regarding her staying at home vs. assisted living, etc. Please try to heave family help you, a trusted friend or someone from church perhaps? You need to carve time out for you, whether its going to a movie, a hot bath or curling up and watching a favorite movie or tv, reading a book and ordering take-out you need some time to take care of you. Hope this helps Hugs and prayers

You have to find a methodology to get yourself into positive mood. Seek out a psychiatrist.

My father had COPD, it is sad watching. He mostly watched tv and nothing tasted good. The dr said don't make him eat. We did get a drug that helped his appetite. he was 134 lbs when we lost him. He passed about a year and a half after he got sick. I was so afraid he would have a painful scary death because he couldn't walk 2 feet without suffocating. It is weird, he told me when he was passing. Took the biggest breath he had taken in years and the peace that came over his face was unreal. I was blessed to know he had found a better place.

My mom had different symptoms, but was miserable. I got involved with her medical doctor and we got her to see a psychiatrist. She also went on meds for anxiety/depression. It really helped her and she feels better now, gets out more and seems to have more energy.

I'd have your momm checked out to see if meds could help her mood. Maybe, she's depressed. If you need meds, it's difficult to just will yourself to be feel better. I'd do the same for yourself.
Maybe, you need more sleep. Sleep deprivation can cause you to feel down, unmotivated, sad, etc. Working with getting your body feeling better can often make your mental health better. And try getting more nutritious food in your body. Not dieting, but, focus on good stuff.

I'll also suggest some things that may sound silly, but, they always pick me up. Granted, I don't suffer with depression, but, if you are just down and blue, I found that getting things accomplished around the house made me feel better. Such as cleaning and organizing drawers and closets, getting my finances updated and making a budget so I know I'm on track, painting a small room or wall in the house to add color, picking out a new shower curtain and decor for the bathroom, planting an herb garden on the porch, starting an exercise program. These are things that helped pick me up and made me feel more grounded, enthused and excited about my life.

Could your mom join you in any of these things? I know that her COPD might limit her activity. If she sees you feeling better, maybe, she'll get motivated.

Glenda, do you have any siblings? Does your mother have any money coming in? Any money in savings? Does she contribute anything? What kind of care do you provide her?

I feel your pain. I wish we had the answer but it's just not fair and we have to deal with it. My mother and I have never been close she has lived with me for 17 years. The first 12 were through her manipulating me and knowing my hot buttons. Since then I have not just been helping but 24/7 caregiver. She doesn't like to be touched, has never been affectionate etc. I share this because the guilt is extreme. My feelings of self worth are lower than ever. Had to retire from Real Estate so have less than $1000 month coming in. That doesn't touch my monthly bills.
Well I could go on but only hope this helps you to know you are not the only one putting your life on hold. Please watch your health. Eat heathy try to exercise and meditate. I know the pressure and it is all consuming. Hang in and keep in touch.

I am so sorry for what you are going through. It is very hard. I think peace comes with time but some days are better than others. I try to stay focused on what we still have left. And I use gratitude a lot. For what we've had together, for the lives, love and laughter we'be shared. And I pray a lot. This is a difficult road but, like others have said, chin up and focus on taking care of yourself while giving mom the only thing you can give her now---love.

I read somewhere that there is what is called Anticipatory Grief. I feel it most of the time. Each morning I wait to hear her move or cough. I feel guilty that I want that feeling to stop. I use to be so close to my mom and now I can barely carry on a conversation. I don't know what to talk about since now mom is passive aggressive to me. She has a wonderful personality with everyone else and I wonder is it me not her.
I keep busy and make time for my myself after I have taken care of her physical needs, her legal affairs and cleaning of her room. I excuse myself from being sucked into "sitting" and saying the same things over and over. Even writing that makes me feel guilty, but I cannot stay able to care for her if I don't take care of me. You sound like a wonderful daughter. May God give you the strength for each day.

you might want to consider a check up by your doctor to see if you have any physical issues and perhaps counseling - your mom is declining in life & yet you have life to live that should be enjoyed and planned for. It is ok to love yourself as well as your mom

You take one day at a time. After age 80, every day is a gift. Try not to get too far past that. Start planning goals for YOUR life, your future and even your retirement.