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Many of you have already had loved ones pass away from dementia, Alzheimer's and various other diseases, but you are kind enough to continue to give us the benefit of your experiences on this site, so......

May I ask you all a few questions?

I am concerned about how I am going to react when Mom passes away, I have had problems with depression and panic and anxiety in the past.

I care for my 85 yo mother and I do not see her passing away for several more years. When my father died in 2006 I thought we would be lucky to keep Mom alive for 3 more years, but 8 years later she is still going although her dementia and effects of medications for it, are gradually taking a toll on her and unfortunately myself, my daughter, and my siblings.

I know that for many of us the stress has been so great for so long, that in a way we look at death as a release or relief that is natural but we feel ashamed to admit it. Many people seem to curl up and pull away from life as they grieve and some never get past it. I was wondering if any of you that have gone through the death of your loved ones and you look back on it now, is there anything you wish you would have done differently? Is there anything you might have done during the time you cared for them that might have helped you more both then and now? Did you figure this all out beforehand and do things to prevent falling into deep grief?

I am asking because I am the 24/7 care giver who is under enormous stress with little to no help at all from siblings. They work and I am on disability therefore the care giving was just a "given" in their book that I should do, because I am home. I have done it for 8 years with Mom and now my panic and anxiety has begun again because I see my life slipping away (61) and my daughter is graduating from college and beginning her life..... a life I have missed out on due to caring for both parents, an aunt and brother in law as well as being ill myself for the past 17 years.

I can see myself becoming more depressed when my mother dies especially since I already feel like I have Post Traumatic Stress Disorder at times from what I am currently going through. I look at my age and wonder if anyone would hire me to do anything, I find myself passing pre schools or other businesses and wondering, "Would they even let me volunteer?"

I need to "head this off at the pass" if there is anything I can do NOW to help save myself when Mom is gone. Although I am sure I will feel relief, I am also sure I will feel lonely, at loose ends, and just plain old "lost" when she is gone, because my every waking moment is spent running to meet her needs and the needs of this household.

I had thought that perhaps leaving the house now, to take a class or visit a friend on a regular basis would help, even getting some type of part time job, but to do this I need the assistance of my family, which is not coming. As a matter of fact my older sister who lives with us stays at work 4 hours past quitting time (she works part time), so she does not have to come home and help deal with the issues of Mom. My therapist tells me I MUST leave the house each weekend and go do something fun with my daughter or a friend for my mental well being, however this same sister, has told me I can no longer leave the house, without her permission!!! My reply back to her was not a nice one! She has no right or authority to try and keep me at home, this is a jealousy issue. But it gives you an idea as to what I am up against.

If any of you could or would give me advice I would appreciate it. I feel like I need to begin "putting on the life jacket now, to prevent myself from drowning" later on.

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I cared for my dad in my home for 5 years until he had to go into a nursing home. He lasted 6 months and died last May. The last time I cried from missing him and from grief was....3 days ago.

While I cared for my dad and while he was in the nursing home I wanted to make sure that after he died I would not have regrets. I did the same with my mom but my dad was more recent so that's why I'm talking about him and not my mom.

We knew my dad was dying. He had lost his mind and was on hospice. The last week of his life I took off work and was with him everyday. The day I went back to work, a Saturday, I worked 12 hours. It occurred to me to stop off at the nursing home on my way home and see him but I didn't. I was tired, I had been there all week and I had another 12 hour shift scheduled the next day. After I got home I grabbed a quick shower and called the nursing home to check up on him. I was told that they were getting ready to call me. He had died half an hour ago. Had I stopped off to see him I would have been with him when he died. I guess that would horrify a lot of people but I know in my heart that I did everything for him that I could, that I needed to get back to work after being with him all week, and that things happened the way they were supposed to happen. I guess I could have used that to beat myself up over and over but I haven't.

As for how it's been since he died? I'm not ashamed to admit that there is relief. Things were so bad for him at the end and the stress was unimaginable (meaning I could have never predicted that I could experience such stress every single day, day after day). So yeah, there was relief. After all the arrangements were made and everything like that was done I was numb for a while. Yes, I missed him but as I said things for him were so bad at the end. I didn't really go into a depression at that time as I expected I just carried on with life and it was a new life because I had been my dad's caregiver for so long. When he went into the nursing home I moved from the house we shared and got a job so that stuff was already in place and I just went on without him. But each time I think of him I get a pain in my heart. An actual pain in my heart. And when things aren't going well in my life for whatever reason I think of him and I miss him so very much. He was a good, good man and had always been a wonderful father.

As for what you can do now to make the landing easier for you I can't imagine what there is to do. Some of us grieve while our loved ones are still alive. I know I did but it wasn't the same as when he died. If there was something that could be done I think everyone would do it but we have to feel it. We have to go through it. There's no way around it but right through it. Sometimes I miss my dad more than other times and at times, for whatever reason, that grief is right there at the surface, even after all these months.

Just be a good caregiver, realize that you're human and that you're not perfect. Make choices that won't come back to haunt you later. That's all I can tell you. Just do right by your mom and you won't have any regrets. And if you find yourself with regrets after she's gone be realistic. Looking in the past at our actions isn't always reliable. Don't get into a whole self-pity thing. Be reasonable. Do I wish I had stopped off at the nursing home on my way home from work the night my dad died? Absolutely. But I didn't and I had no clue he was going to die that night and I had been with him almost 24/7 for a week and I had to get back to my life and that meant getting back to work. That's life. I don't beat myself up about it.

Just be a good daughter and I think you'll be fine. It's ok to be sad and it's ok to feel grief and it's ok to be depressed after a loved one dies. 10 months later and I cried like a baby Friday night over the loss of my dad. It's hard. But we all have to go through it.
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HC, I think you are going to be just fine. You are doing your best now and you seem realistic enough not to have regrets that you weren't perfect. (She wasn't a perfect mother, either. We are all human.)

I think your best preparation is to get yourself as healthy as you can now. It sounds like you are seeing a therapist. That is great! Continue that, and do your best to follow the advice that makes sense to you. (Get some in-home help! Get out!) Get your panic attacks under control now. Treat your depression now.

Remember that grief is not pathological. Grief is normal, and it gradually diminishes. Our caregiving situations are not "normal." and our grief is apt to be complicated, too. Continue to see your therapist after Mom dies. Don't expect to avoid grieving, but talking to a counselor can help you separate normal grief from anxiety and depression which need treating.

(I'm saying these things based on my own experiences. Yours may be different.)

I had a long list of things I wanted to do again after I was no longer tied to caregiving. In the year since my husband died I did do many of them, but not nearly as many as I expected to do. Partly that was for lack of money, and partly lack of energy. I'm glad I did the things I did do. It isn't all-or-nothing. Give yourself time to get back into a non-caregiving pace of life.

I feel like I was recovering from two things: the death of my life partner. The loss of my purpose and focus. This takes time. Don't let anyone pressure you or bully you to recover at an uncomfortable pace.
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I've been in your exact situation the only difference is that I was caring for my MIL. First, you are never really prepared for the passing of a loved one. No matter what u tell yourself. I too am/was on disability while caring for her and it took a huge toll on my physical and mental health. Sometimes I think the emotional and mental stress is waaaay more taxing and difficult to recover from. And, I wouldn't be surprised if u did have a form of PTSD as a result. My answer or suggestion to u is this, find a home care company that can come in two or maybe three times a week for only a few hours a day to help. Please don't play the woulda shoulda coulda game with yourself? As long as u can look yourself in the mirror each day and feel good about what u are doing, give yourself a huge pat on the back. Most siblings these days aren't willing to do what u do. So great job my friend. And, btw, don't feel guilty if the thought of "sometimes I wish she'd pass already, cuz I'm tired", crosses your mind. It is totally and completely normal to feel this way. And, this is a great way or place to vent, and not feel guilty about anything. We've all been in your shoes and walked that same road. Good luck to you. (((hugs))).
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Dear eyerishlass, wow, the very same thing happened to me. I had been visiting my MIL in the nursing home every other day for close to two years. We were so close that she referred to me as her "daughter", not DIL. I was closer to her than my own Mother and treated me better. I wasn't feeling well, in fact I was fighting the flu at the time she passed. I didn't go visit that week for fear of spreading it to some of the other residents. The week she slowly crossed over was hard on me. The night we received the call it was one-thirty in the morning. I felt such a feeling of guilt, but said to myself that I know she did it on purpose in order to spare me. That's how she was. What I did do, was get in my car and drive over before anyone whisked her away. I brought with me a small make up bag and went in to say my goodnight to her and proceeded to fix her hair and "spruce" her up a bit. I know I would want someone to do that for me. And, before the dementia hit hard, she wouldn't step out of her house unless she was done up. That was my final gift to her. She left a hole in my heart that can never be filled. But, she left a lot of love there too.
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Why are you worrying about this now?

To me, this is a symptom of an underlying condition of allowing your mind to dwell on and dread the future. You can't control what happens any more than you can go backwards in time and change past experiences about which you also may be obsessing.

Actual, unpredictable future circumstances will determine what to do.

Meanwhile, learn to live in and give thanks for the current moment. Live your best life right now because that's all that truly exists for any of us. God bless.
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The things I've done since the passing of my Mom:

Went to bereavement group at Catholic church in my neighborhood, even though I'm not Catholic. It was very helpful for me. Others said it didn't help, so I think its a matter of how open we are to the 'help'. When it was over, I wished it continued.

So, I keep coming to this site and hope to help others with my experience.

Signed up for exercise classes. Community classes are very inexpensive and they are populated with people over age 55 and everyone is lovely. The workouts are gentle.

Joined a gym where it's populated with much younger people and everyone is very friendly. The workouts are challenging and I just do my best.

Yoga, gentle/therapeutic level only. This helped me relax and think about my sons.

Now, it's a year and a half later and I've signed up for community school classes. Drawing, how to keep resolutions, healthy cookies was not so healthy, but I will keep trying to find interesting things to learn.

I go to everything the library offers for free, particularly in the evenings.

I joined all three book clubs at my library. I don't always like the book choices, so I am looking into the book clubs at other libraries. I have read stories about North Korean prison camps and suicides and murders, but have decided to only read books that are GOOD!, healthy, up beat, positive, constructive and teach me something amazing about the world.

All this is a long way of saying, my family and friends who are still working and have young families got tired of talking about my Mom very fast. It was helpful to get out of the house, to move my body and to read and to stimulate my mind.

Life has moved on. I still miss her, but I'm happy that she knows I loved her and that I took good care of her until the end. Her words stay with me and she is in my heart and in my mind. I'm blessed with good memories.

However, as I've gotten older it has become increasingly difficult for me to stay healthy, so I have to get up and get moving Every Day!

When I wake up in the morning I say, "I'm lucky, I'm lucky, I'm lucky." I'm lucky for the challenges that have come my way, because they are a puzzle for me to solve and I am lucky for all of the blessings. I'm lucky that the sun shines and I'm lucky that the rain waters the flowers that will come in the spring.

I wish you lots and lots of luck and blessings as well. I am sure you will find them all around you if you just keep looking for them and as they say, keep moving forward.
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The longer I live and experience very stressful events, the more I am convinced you can talk yourself into a depression. Stop it before it starts! And for heaven sake, what are you worrying about a depression when your mother hasn't even passed? You could very well talk yourself into a heart attack and die BEFORE her. So live each day with a positive attitude, and tomorrow will take care of itself. Stop over analyzing how you will feel. Maybe you will be glad as most of us are because we know the pain and suffering of our loved one is ended and so are our caregiving days. You are in charge of making yourself happy and you can use your brain for happiness or depression. The choice is yours.
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You already thought this was just for 3 years, now it's 8. Don't miss spending time with your daughter. If your therapist tells you to get out to do something fun at least once a week, why not just do it? Don't wait for your sister or anyone else to help. They obviously aren't going to. As others suggested, find someone to come in. Even though this might be for your peace of mind, it is my opinion that if the caretaker costs money that it should come out of Mom's money, too. After all, you're giving her all your time and I just think it sounds fair for her to pay for the time that you have someone else take care of her.
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I just went through this in October. I took care of my mom for 10 years after my dad died. They lived in a duplex with us. It was mostly myself, my husband and daughter doing her care until we could not take care of her appropriately anymore. It was a relief when she passed because she was my every thought a milliion times a day and through the nights. I had a camera to watch her from work and checked on her throughout the day. I would wake in the middle of the night and check the camera to see if she was sleeping. I never went anywhere after work because I knew she needed to eat and needed her meds. I felt guilty because she was so lonely during the days and when we came home from work and she came downstairs to visit and just get human interaction, we all became irritated because we just wanted to get dinner and do laundry and our own things at night. When she passed I would come home from work and do my normal things and then by 6:30 or so I was sitting in my chair feeling guilty for having nothing to do. I expressed this to a co-worker and her words have stayed with me. She said "that's called living and that is something you have not done for yourself in long time. Enjoy it and you deserve it". How right she was! How right she was.

My advice to you is do the best you can but the most important thing is to take care of yourself first. You MUST have an outlet because it puts things in perspective. There is only so much you can do and give of yourself. I had a couple mini nervous breakdowns at the end of my care for her at home. Finally one day I just knew I had to put her into care because my own health and family was suffering to try to take care of someone that needed more care than we were capable of giving. Don't beat yourself up and don't get depressed.

Looking back you ask what would I have done differently? I would have given mom more of my personal time and not been so selfish. I would have put her into care sooner for her and I both and not felt so guilty. I would have loved her more and tried to be quick not to anger. I would have imagined myself in her position with end stage dementia and not knowing what was happening to me and just looking for a trusted face to know that I was cared for and loved. I would not beat myself up with guilt for not being able to do it all. I should not have let lazy siblings who tried to control my life get to me. I would have been the strong woman my mother was and whom she raised the same way.

Be strong and accept that when she passes she is so much better off. I cried very little when my mom died because I knew she was so much better off and she didn't want this earhtly life anymore because the life she knew was stripped away from all of us by the dreadful, debilitating disease of dementia.

Blessed are all of us who have the opportunity to take care of those we hold in our hearts always. You will look back and feel so good that you chose to take care of her and did your best. Hopefully at the end of our own lives someone will feel that way for us! God Bless and Good Luck always......
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I personally think you need to get your mother into an assisted living home. My husband died on Feb 1 and he was in a wonderful home. I did everything I could to make him comfortable and stimulate his mind. I had lost him to alzheimers a long time ago and I was with him everyday the week he died. All the kids came and he waited for the one who was away to get there before he died. I am sad and am comforted by all the nice things people said about him but I am not devastated with grief. I is a relief to have him out of his life with little quality. ACtually, after a few weeks I have more energy than I have had in months. I think I was more stressed than I realized. I have dealt with depression and anxiety in the past and I think you will be fine.Let yourself grieve and then take care of you. GEt out and do the things you couldn't before and above all don't feel any guilt. YOu have done the best you can.
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