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I'm so glad I found this website. I get so much strength and Hope from hearing everybody's postings. I take care of my 90 year old mother with Alzheimer's. She doesn't know who I am 90% of the time but when she does say hi darling to me it lifts my heart. I actually do have some outside help but still feel stressed tired and anxious. They say to take care of ourselves but its just hard to do. Yesterday I went and had an hour massage. I slept really well last night and felt good and sort of happy today. I need to remember to take time out for myself before I get too exhausted. Mom is not on hospice right now but when she was there were volunteers that would come stay with her so I could get a break. Maybe there are resources like that in other cities.
One day at a time
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I've been there. Still am ! No help from siblings at all. They have said they will not even come visit her. My mother is very lazy and has been catered to for 50 years by my father. He created a monster. I have however made my own rules to cope. She must do what she is capable of doing. No more dragging me down with her. I still work even though I must drive one and a half hours to get there. I hire a women for an hour or two to give me breaks. As she gets worse we will change arrangements but for now I just yell at her in my car where she can't hear. I also keep in touch with Office of the Aging for advice.
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This web site is wonderful. When I feel a little down I come here and then I am so grateful for what I am going though. So many have so many things on there plate to deal with that I feel I am really lucky compared to a lot of you. Keep up the good work as so many of you are so amazing at what all you all do for others.
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I'm not coping well today. My crazy Alz mother demands too much of my time. She wants to go everywhere I go and wants me to take her out all the time. She sticks to me like a leech that I can't shake off. Uggg. I want me time, and time for husband and kids. I can't stand her.
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I understand, polarbear, for wanting "me" and "husband and kids" time. That's totally reasonable. Today, I asked Sister 1 for help in getting relief. I tried to explain I'm exhausted as I'm here 24/7 and haven't had a decent night's sleep in months. Initially she sneered at me and batted away my issues and wouldn't even let me get most of it out. We ended up in a screaming match where she said Mom's lawyer could change the POA (yeah, she dragged me down into the rabbit hole), which was interrupted by a call from Mom's doc's office calmed her down we did kick around some ideas. It's a start. Now I just need to calm down from the stress.
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MountainMoose-I feel for you. At least my brother comes once a week for a few hours. I hope you and your sister can work something out.
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I just retired in June 2017 at the ripe old age of 65. Same time my mom who was 82 years old could no longer take care of herself due to dementia. She also has osteoporosis and, therefore, has to eat healthy and take vitamins. So as to not having to be a prisoner looking after her, I discussed with
my sister that we would take turns and each would have her for six months. However, my sister does not care what she herself eats much less what my poor mom eats. So my mom went from 148 lbs to 137 lbs now that she returned to me. Her memory is worse now and she cannot walk far. I am thinking not to send her back with my sister, but I realize that my freedom will be over. Another sister who likes to take care of people offered to look after her if and when I decide to travel. She does not qualify for Medicaid because she has a pension plus social security and a small sum in the bank. She likes to socialize and my sister refused to have her go to a senior center. When she was here with me, I took her every day to a senior center. I am looking into taking her to a new center that caters to seniors with dementia at least three times a week. It is not easy. I feel overwhelmed. She will be 83 yo this year. Her mom lived to 85 yo.
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I was just thinking that maybe this trend of waiting to have your babies later will have some unintended positive benefits; when you are 35 or 40 years older than your kids they will still have the energy to look after you when you are 95 or 100 😉
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ODG Cwillie.. I am 59 and my mom is 87, just starting to get "slippy" and still pretty with it.. and I am still tired! It's not something I wish for my 30 YO daughter,,, but she once (at age 10) looked at the new NH they were building near us and innocently said "I'll put you and Dad there". I threatened to change the will! But no kidding.. I hope she never has to care for us!
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Mom was 40 when she had me (the baby of the family)..... bonus! cause I'd never have been able to look after her if I was 10 years older.
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It’s just so hard. The loss of privacy. The telling them when and where you are going. The constant repitive statements. The loss of their personality. The ground hog day movie. Every single day the same. Not knowing when it will end. People telling you , what you could / should do better. No help. Husband getting resentful. Daughter not coming back to visit. What did I do in a past life ??? Must have been a terrible person.
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But by the grace of God go I.
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My husband is 94 with Alzheimers and terminal cancer around the face and jaw. I am 89 and have been his 24/7 caregiver for almost 4 years with Alzheimers and the last year with the cancer. The doctors have put him on pallative care with a Hospice nurse who comes twice a week to change bandages and gives a general exam. In between her visits I change the bandages as well and the bleed-outs at night plus all the things that go withAlz and housekeeping as always. We have been married almost 66 years and friends for 69. He knows me and is in denial regarding any and all of this. I do not allow the word cancer used around him . We were both professionals and owned two businesses and raised three children who live elsewhere and who have definitive ideas on how all this is to be handled. He has always had perfect health and considered by doctors as upper 1 or 2% health for men his age. I have had cancer as well as stomach surgery plus much more and am left with digestive problems left from radiation. Reading this artical made me realize that I have reached compassionate fatigue and have been near the burnout. I was taken to the ER a month ago and after tests came out OK but during those hours I made up my mind to get a volunteer that can come from time to time so that I can get out shopping or lunch with a friend. I had started attending a caregiver's support group at our senior center while my husband attends an Alzheimers group in the same building for an hour and a half and then home again by DialaRide since we don't drive anymore (which has been the worst inconvenience of all) . Hospice has sent a very nice woman to meet us and is coming next week so I can get to a close shopping area without having to worry taking my husband who has to sit and wants to come home almost immediately. I'm feeling relieved already.
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When I read your stories it seems that mine pales in comparison. However, the last two days have really tested me. My mom 83 yo has diarrea. Due to dementia she is at the stage where she cannot take care of herself when she goes to the bathroom. I have spent the night running to the bathroom with her and washing her clothes and bedding and getting no sleep. I am exhausted. If this continues I will end up sick myself. Tomorrow i will take her to a doctor. Perhaps the doctor can prescribe something more effective. I just cannot see myself doing this for a long time. I am 66 yo and in need of care myself and also looking after a daughter who has mental issues. It's just too much. At this juncture she would not qualify for Medicaid because she has a few pennies in the bank plus a small pension and social security. Any suggestions?  Thanks
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Solanu, I am so glad to hear that you will have a person from hospice coming to give you a break. That is fantastic! I hope this visit from her next week is the start of more rest and recharging for you. It seems to be desperately needed.

Celmira9, what an awful situation! It does sound completely exhausting. I am not particularly knowledgeable regarding Medicaid issues at all but one thing I have seen frequently on this forum is the suggestion from experienced folks to consult an elder care/Medicaid expert lawyer (not just any old lawyer, or your lawyer who has handled other things for you in the past) regarding Medicaid eligibility. Apparently there are a few workarounds for too much income to qualify. I hope there is for your mom. God bless you both.
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Thanks for the info. My mom is much better this morning. Question: She signed a POA in front of a notary public in 2015 when she was 80 yo and her memory was still functioning. I am not sure if this POA is valid. At this juncture she has advanced dementia. However, she still can remember her name and can sign it. Is the POA valid? Thanks.
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My parents did their POA in PA when I was in my 30s.. I am 59 now and I have never had any problem, was even able to sell their home due to the wording. However, I would call a elder care lawyer and at least ask about this.
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Erinm60. So there with you. I've answered before but things vary day to day. Good luck to all of us
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So true Erin. I've thought of this so often.... NO ONE knows exhaustion until you're in our situation... which most opt out of... (I'm also totally whipped)
💕
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My husband and I were out of state for about 6 Days. Visiting his mom. My daughter was here with my mother. Everything is ok. I had arranged for aides to be here 2 hours a day but because my daughter decided to stay, we didn’t need them. Bottom line ,
I feel better, my husband feels better , and my mom did fine. Maybe the doom and gloom of being 24/7 can be alleviated by little breaks.
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I cared for my wife with Alzheimer's for 12 years. Little by little I gave up my life to care for her. She died 7 months ago and now I'm having a terrible time getting back into living. Friends and family were put on hold while I cared for her. Now they are busy with there own lives. I'm having to make new friends. Her family is of no use and mine tries to be there but only if I fit into their schedule. It's tough. I do know God is still in control. God keeps me going.
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My 92-yr old mother lives with me. Has pretty good health for 92. I am single and 64 and meet up with my daughter every couple of weeks for some fun out. The last time, it was on a Friday night and I had such a good time with her that when I came home I wanted to go directly to my room and not have to "report" to my mom. I managed to "sneak" in and close my door and soon thereafter, she started knocking. My car was home; I was obviously back home and I just didn't want to talk with her at all. My one night out I wanted it to continue and listen to my music (earplugs). I didn't answer. She didn't stop, she started banging on my door, going outside to the sliding glass door and knocking and calling out, and then calling my cellphone with more repeated knocks at the door. Luckily, I had locked both doors because of course she tried to open both doors etc.
No, she does not have dementia, but she is definitely narcissistic. I have read everyone's comments on here and admire all of the selfless caregivers ... but I do not see myself being able to continue on with my mother. All she has said she wants is to be in her own home (3 hours away) and am afraid that may be the best, and hire in help for her. My worst fear is that I am being dragged down into depression and that she will live long enough for me to go downhill and we "die at the same time". This goes right along with her lifetime narcissistic personality, that I am just an extension of her, and her needing attention all the time, etc. etc. In her mind, I am just for the purpose of doing her bidding....
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MyOwnlife. We are practically in the same boat. Only difference my mom has some dementia. She was diagosed with Alzheimer. I also don't think that I can continue with this responsibility of caring for my mom. She will be 83 yo soon. It has been so stressful that i have gone from 117 lbs and 66 yo to 90 lbs due to the stress. My friends do not understand because they have not lived through this. They remind me that she took care of me and she reminds me how she paid for my private school. Like you i sometimes lock my bedroom door to read and use my computer just to have private time to myself and she gets upset and comes to the door yelling things at me. I look like a scarecrow now that I lost the weight and don't want my friends to see me now. I hope i can gain some weight b4 the summer gets here and I cannot hide under the heavy winter coats. I feel tired. Very tired while she gets all the services. And no relief in sight. I pray quite a bit.
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Praying does help. I am caregiving my 88 year old mother with Parkinsons and she's the same way. If I go into a different room she starts calling for me. Even at night, in her sleep she shouts for me. If I go and check on her she's sound asleep and didn't even know she did it. I tried doing a work at home call center for extra income but it was impossible, I couldn't get even ten minutes of uninterrupted work time. Just try to get away when you can, I guess. I have a nurse that comes Tuesdays so I get to a Bible study group and my brother will watch mom about one Saturday a month. Friends have kind of all gone, they don't understand or are willing to fit into my limited free time.
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Hi Carerick - 

I know what you mean about not having friends, and limited interaction with family members. I think all of us do. Now that you have the time, friends have moved on and family members are too busy. Since you're having difficulty getting back into living, I highly recommend you post your situation in a separate thread so that more people will see and can give you their suggestions.

Here are some of mine. Not knowing how old you are, but I am guessing you're old enough to be a senior. You can check out the local senior centers near you. I have an aunt who LOVES to go to senior centers because of the many activities and classes that are provided there. She takes up drawing, plays ping pong, talks with other seniors, etc.

Also, check out Meetup.com. There are many groups that get together and do fun things. Check out and join whichever groups that interest you. People with similar interests get together to do things such as walking, hiking, going on a field trip, learn a new language, etc.

If you own a certain type of car and are a car lover, there are clubs for people who own many types of car makes. Just look up on the internet and you will find those clubs. A friend of mine owns a mini cooper and she joined a mini cooper club. They help fix each other's car. They go on trips across the country and have a lot of fun. And if you own a motorcycle, well, then you can join the Hell's Angels. Haha.

Also, if you have time and energy, adopt a dog from a shelter. Dogs are great companions. Save a dog's life and it will give you unconditional love for life.
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Celmira9 and kbuser,

Thanks for your kind responses. I don't quite feel entitled to be on here as my mom doesn't have dementia or require physical care... yet... but it's the "I'm the only one" aspect and although I work full-time (albeit out of home ), she seems to feel like all of my non-working time should be "playmate" time. And if it's like this now, without everything else like so many others are doing physically to care for their loved ones, I can't imagine what the future holds. Oh and Celmira, I so wish I could give you some of my extra 50#. You really really are going to need to put yourself first. You have value and are still very young, and I am right behind you age wise. And we and kbuser, we have a right to our lives and happiness. Take care of yourselves!
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My mind has turned to mush in the one year I've been caretaking Mom 24/7 (I have more going on in my personal life that's almost crushing by itself). I have no energy and force myself to slog through a day. Somebody can ask me a question when a particular thing happened and I can't recall if it was last week or two weeks ago; nope, it was yesterday or this morning. It's scary. I'm sure I can recover from this when I leave to go back to my home in another state, possibly in a month.

Mom seems to now be in the "preactive dying phase". After almost two days of being in and out of sleep and eating little then sleeping 18 hours straight, yesterday hospice brought a hospital bed which Sisters and I set up the living room. She could pass any time yet could still be here for a year! For her sake, we wish it was very soon. She's suffering even with 19 prescriptions. The anguish in her eyes is gut-wrenching.

I've got my car up for sale in preparation to leave for home. A lot of guilt. It's terrifying to me and guilt-producing to be working toward heading home when we have no idea how much time she has left. I've even told Sisters I'm rethinking leaving! I don't know what to do. There are so many times we have read on this forum: I wish I had a crystal ball.
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I should have read through these posts before I just posted on another page about wanting to pull my ALZ dad out of a nursing home back to his own home where I can move in and take care of him, assuming he has just weeks to go. I still so much want to do it, but reading these posts helps me see the reality and maybe as much as I would like to, I just cannot do it.
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Oh my God. I am so tired. I have only slept 2 full nights for the last 3 months and it is all so hard as I am no longer young any more either. I feel guilty complaining as what all of you are going through is so much worse than what I have to go through. I guess we just have to pray for strength for all of us to get through all of this. What other choice do we have but to take it one day at a time, and pray we outlive who we are taking care of.
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Kathy2468
We might outlive those we are caretaking, but in what shape? My dad lived to 100 yo. My sister took care of him and neglected herself. Now she is in need of a kidney. While taking care of him she ignored constant headaches. He did not have Alzheimer. She is in her 50s.
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