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I took care of my mother, who had Alzheimer's, almost 24/7 for two and a half years until she passed last September. I found this place helpful while I was caring for her, so although I know this isn't a bereavement forum I just wanted to see who's out there who may be going through something similar.

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Bringing this back up to tge top on behalf of other caregivers who have lost someone.

Biscuity, How are you doing today?
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I'm glad to know I'm not alone here. I only had one nightmare, the afternoon after she died, but I have been having panic/anxiety attacks ever since. They've gotten better over the months but haven't fully gone away. It does help just to know other people are going/have gone through this too.
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Barbfunk, To prevent nightmares, avoiding the thread "Did hospice rush your loved one to death?" and just posting here, on this thread-you can get some support. The other thread is fraught with highly charged emotional issues-you may not want to be exposed to the controversy at this time of loss. Your choice.

Once again, sorry for your recent loss.
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My mom died a week ago. She had some dementia, but her body had been so debilitated by rheumatoid arthritis that she was a complete cripple in every joint even with multiple replacements over the years. she was at a wonderful assisted living site where they loved her like family. two weeks go, the clots in her leg (ruined vascular system also caused by her disease) and she was in terrible pain, moaning and writhing. She was already on hospice, because of her many problems with clots and all her other problems. the pain was terrible and I had stopped in to give her lunch but instead took her to ER so the pain could be managed quicker. we ended up in a larger hospital, thinking s vascular surgeon could perhaps help. she was, of course, not a candidate, even for amputation. At this point they had started to get her some relief, and she was more herself than in a long time. We had to speak plainly, that there was nothing to be done, and she agreed to place herself in God's hands. She struggled with terrible pain for two days, until hey were able to get ahead of it, and she was discharged with palliative care back to her assisted living. after that, she was pretty out of it, and my siblings, except for one, did not really see what she went through, but they got it, and all were supportive of her meds. we are grateful that she was at least somewhat aware of us all and her friends.

But it is hard, because she is gone. She hadn't been much of my mom for a couple of years, because of the dementia.

I've been mostly OK, because we did the best we could. But now I am having nightmares of her in agony, and when I wake up, she is still dead and I couldn't save her.
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I care for my mom 24/7, who has Vascular Dementia. She is easy going. My 3 siblings, older, I am the youngest, do not come by, 2 do not call. One will call every 4 weeks or so. A year ago my oldest sister came for 2 nights, so we could go out for Valentine's. My husband and I had planned a cruise and asked her a year in advance if she would care for our mom. After staying the 2 nights, 2 months before our cruise, she stated "it was too much work and she would not be keeping her while we went on our cruise." Knowing her, I already had back up caregivers. It cost about $1,500 for people to care for her a week while we were away. Also, this same sister does not drive. She said, if I wanted her to come once a month to help, I needed to drive 1.5 hours each way to pick her up. I totally felt it was not worth the drive. That 3 to 3.5 hour drive takes away from me getting rest. On a daily I shower mom, lotion, dress, feed, which takes 1.5 hours per meal, walk, with a walker, give meds, breathing treatments 4 to 6 times a day, put her on a bathroom schedule. I started caring for her 3 years ago. I no longer work a job. Often I wonder what my life will be like after she transition. I am not looking forward to it. She is my day and my night. My husband does help a lot. But no one is 100% dedicated as you will be. Sorry for the passing of your loved ones. I pray you all find courage and strength to continue to live your life to it's fullest.
Peace & Love
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Dear Biscuity, I lost my Mom 1 month ago today and my feelings are still so raw. Like everyone on this page, my health has suffered from the trauma and stress of watching someone you love die. Mom was doing ok and then wham, went downhill in a matter of 3-1/2 months. It was awful. She had end stage COPD, Vascular Dementia and I think was having small strokes off and on too. We took care of her at home for 10 mos; then the last months were in Rehab, nursing home and finally a wonderful memory care home w/hospice. I think watching her lose her mind and her personality was the hardest. Each day I'd try to get her to eat, and she'd eat less and less until I knew that her body was giving up. When I finally told her it was ok to "go Home" she must have been listening because in the next 24 hours, the last stage began and then she was gone within 24 hours. I was devastated but also relieved she was no l longer suffering; yet I am still feeling such painful emotions. Add to all of that, a now ex-friend decided to send me hateful emails the last 2 weeks mom was alive - the ex-friend was jealous of a friend of mine who had helped me thru several crises with my mom and I'm still dealing with the fallout from that! I am furious with that woman and also mad at my husband who should have stood up for me since he was involved too. Add to that I have diabetes, adrenal insufficiency and depression. However, am headed to a counselor today to try and get some of the grief and anger out of my soul. Altho I know Mom no longer suffers, I miss her; yet too at times it is a relief not to caregive anymore - I think caregiving is the hardest job any woman can have besides raising children. Thanks for posting Biscuity, hugs, Robin
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Biscuity.....I just lost my Mother after caring for her 9 and a half years 24-7.I feel totally lost without her and I feel like Iv'e been through the war.My whole body is in trouble from doing it All for so long and I have several surgeries ahead.I never stopped and I never got done.I was always scared of finding Mom gone.When she left,everything stopped suddenly...every single thing changed.
I was so thankful I found Agingcare and to learn there were lots of caregivers out there and everyone has been so helpful and kind.I appreciate continuing to hear from those that have lost their loved ones and know I'm not alone in dealing with loss.Your question is a very good one and has made me think a lot.It was wonderful of you to take care of your dear Mom and I'm sorry for your loss also...."Aftermath" is the perfect word......Take care and thanks,Lu
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My father's wife's kids took their house and forced them into assisted living. I tried like heck to get my father to come to Colorado but he stayed in a miserable Brookdale two room apartment until he was rushed to the hospital where he died days later. He would not leave his wife and he never got a penny from the home sale and died broke and broken emotionally. I urge you if your parents are remarried to get the legalities dissolved in dementia. It will save you a lot of heartache later to get them home and hire someone to help part time. I have so many regrets and I cry daily since he died 8 months ago. Hospice care was short for him after we declined life support... maybe 3 days but Brookdale Assisted Living ignored my insistence on getting him to his doctor and the one who did rounds also failed to do anything. No phone, no wifi, no medical staff, he was cut off from me and he was so stressed that he died 120 days after entering assisted living. Nothing I could do to convince him to leave his wife and her children were greedy and used him as a caregiver until his demise. I urge anyone who has remarried parents to take steps to avoid what I had to go through because it is gut wrenching to watch your parent die like that.
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Blessings to you. Contact a local Hospice who has grief and loss seminars. I have been there. Had to give dads chair to my brother because it kept reminding me dad was there. Memory eternal!
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I know what you mean, tacy022. My mom's passing was a beautiful experience in some ways because she was no longer trapped inside a broken body.
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When the old man died, I felt relief and I dont know how to describe it but a kind of joy. The last 6 months of his life, we had in depth discussions about how he wanted to pass, he felt bad he outlived his parents and all except one sibling. Since his brother was diagnosed with cancer and was younger than him, he did not want to outlive him. He felt useless because he could no longer do the things he once did and had so many restrictions. I do miss our conversations but Im happy he accepted what was happening, is not in pain and is where he wants to be. I am the type of person that cried during the suffering but didnt cry when he died or since then because I know he is no longer in pain.
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I think it's normal to feel conflicting emotions. AmyGrace I'm having the same thing with health problems! My boyfriend keeps having to remind me that it was a trauma--the whole 2 1/2 years of taking care of her and then the last couple days in the hospital. It's been 7 1/2 months and I'm still trying to get my feet under me. cwillie thanks for posting that, I didn't see that thread. Whenever I see your name it makes me think of mom because we called her Swilli lol (childhood nickname). freqflyer yeah cleaning things out is awesome and heartbreaking. I knew it would be hard so I tried to do a bunch before mom passed. She kept *everything*. Thank god my folks didn't have a bigger house!
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My feelings are also mixed. My Mom lived to 98, and she and Dad lived on their own until the final 3 months. Mom passed last December, she didn't suffer so her death was peaceful.

My feelings are so very similar to that of AmyGrace above, both sad and relieved, and also feeling guilty about being so relieved. And for me, relieved that Mom went first, otherwise it would have been a nightmare if Dad went first. I know it is terrible to think that way. Mom refused to move from a 3-story house, all those stairs, refused to have caregivers in the house, refused to have a cleaning service. Thus I was also resentful that she put Dad into the same situation, as he wanted to move, wanted caregivers, etc. She was sharp for someone in their late 90's, but so very stubborn.

Right now I am cleaning out my parents house as Dad is now in senior living and enjoying his final years, he really missing my Mom, but he also has resentment as if she would have listened to him, she could have been living at the senior living with him, as it was a serious fall that took her while she was doing household chores.

While cleaning out the house, this was awesome but heart breaking to find my Mom's wedding dress and shoes that she wore over 70+ years ago. I never knew she had them. It's like I am erasing any traces that my parents had lived in that house.
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www.agingcare.com/discussions/love-notes-from-caregivers-who-lost-someone-186973.htm
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Bless you. You are an angel caring for your mother all that time. I cannot imagine it. My mother passed the end of March. For many logistical and family reasons neither my sister nor I were 24/7 caregivers and she didn't want us to be. She was in independent living for 8 years, then a year in AL, and finally 5 months in a NH. During the last 10 years I made hundreds and hundreds of trips to do laundry, shop, doctor appointments, visits, cleanups, monitor her etc. Emotionally and wear and tear back and forth for years kept me very busy and never far from home. We had planned to move to another state, but stayed because of her.
In answer to your question: I have some very strange and conflicted feelings since Mom passed. She was 101 so obviously she had been part of my life for my entire 70 years. She was my closest friend until she was about 85-90 and then she changed and wasn't the same person. I loved her, but she was very difficult and emotionally draining, she was depressed and unhappy and negative, although healthy and blessed with enough money to live well and we did what we could, but couldn't make her happy or contented. Until she went to a NH when she fell, she was quite independent but then I watched her fade away over five months. So, my feelings are mixed. I miss who used to be my best friend, but on the other hand I am glad she is gone because she was a stranger, even to herself, and had no quality of life and, at 101, her time had come and it was a relief for all of us. Yet, there are times I still have a momentary thought I should call her and then I remember she is gone and I will never talk to her again. Grief is an odd thing for me, both sad and relieved and feeling somewhat guilty about feeling relieved and free of worrying about her and feeling helpless to change things for her. I'm having a lot of health problems now that the stress has stopped, my body has reacted. It will take a while, I think both emotionally and physically.
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