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We live with her. She hates to get up in the morning but we must get her up as she is incontinent and I have to change her. She also gets many UTI's so must try to keep her as dry and comfortable as possible. She has had many TIA'S and the last one left her with limited mobility. She needs assistance with almost everything. Helping her up, walking with walker, helping her to sit, toileting, getting dressed and undressed, getting into and out of bed and the list goes on. We get out to grocery shop and do errands about 7 hrs/week dividing into two 3-1/2 he days when we have a caregiver. Also at times get out for an additional 3 hrs for religious meetings and must pay for this by the hour. She hates it when we go out even for this little time. We love her dearly as she has been the best mother anyone could ask for all our lives. I am so extremely stressed out as I feel like I don't have a life of my own. I take all of us to Dr. Appts. etc. All she wants to do is lay down from the minute she gets up all day long unless we go to an appt. We don't have much family left and don't really live close to any remaining ones. I am trying to live my life best way I can taking one day at a time but things here are so stressful for me. She is really no trouble while laying down and watching tv most of day but needs her meals prepared and meds given which she hates to take but must make sure she takes them. Must keep getting her up throughout the day to use bathroom. We don't want her in a NH while we can care for her as she would hate it so much. I have been caring for her for over 6 years now. My brother could stay with her for some hours in the afternoon but I feel like I have so many responsibilities at times and usually end up staying at home. Feel like things are so miserable but trying my best.


Guess I'm just venting now and don't really think anyone can help me but any advice welcome. Thank you.

karyll - I am quoting you below.

"But still death is not natural and I don't want her to die. I just don't want her to suffer as she suffers now. Still I need a little time for myself but she hates for anyone else to stay with her. "

I am not sure I understand you correctly. Why would death not be natural? It's as natural as birth. Maybe you can explain what you mean.

Many posters here have recommended a book called "Being Mortal" by Dr. Atul Gawande. I read it and it helped me come to term with what's important at then end of life. And longevity ain't one of them. There are things worse than death. In fact, I don't think death is bad. Our bodies are not meant to go on forever. Our souls however do go on, free of the diseased bodies. I highly recommend you read that book.

As for your mom hating anyone but you to stay with her, I do sympathize very much. My mom was exactly the same way. All day long, she followed me around the house, even to the bathroom, and kept asking dozens and dozens of time every hour when I could take her out, and only I could take her out. That was her form of entertainment. She wouldn't go with anyone else.

Mind you, I have 2 young children that I homeschool, a husband, a home, a dog, cats, and chickens to take care of. I did try to take her out everyday twice but I got sooooo tired. Not enough time for my kids and husband, and none for me. I was always so stressed and high strung and angry, to the point I had to go inside my van, shut the doors and screamed out my frustration almost on a daily basis.

I finally decided I had to get someone else to take my mom out. I couldn't do it much longer without losing my mind literally. A family friend got the job. The first day she came (with a nice gift for my mom which I paid for), I introduced her as my mom's niece. My mom didn't remember any relative at this point, so she would just accept what I said. We all went out together in the friend's car. Things went well. My mom liked the 'niece.' The second time, we did the same. I went along. After that, with some nudging, my mom was OK going alone with the 'niece' without me. It wasn't all smooth sailing. There were a few times when my absolutely refused to go out with the 'niece.' So, we stopped for a couple of weeks, and tried again, and was successful. It's been great since then. Now, I have 3 people who I pay to either take my mom out or stay with her at home. My mom is OK with all of them. She doesn't care if I don't come along.

If you want, you can try what I did. Bring someone you trust over, introduce that person as a relative, have her/him hang out with you and your mom a few times. Gradually, leave them for a very short time, then longer and longer. It will work. It has to work. There will be times when you can't possibly be with your mom, so it's better to get her used to have others around to help her. Good luck.
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karyll Apr 1, 2019
Hi, thank you for your reply.  I'm sorry but I haven't had a chance to be on the computer for quite some time.

I must tell you that death is not natural.  I can explain in detail but I am under the understanding that we are not suppose to talk about the Bible on this site.  If you really are interested in why death is not natural and I can completely answer your question, please let me know and perhaps I can answer you to your email if you would like that.  I don't want to do anything I'm not supposed to do on this site.
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Hopefully you might get some answers from a doctor if she sees one. My mothers one does not assign the stages with numbers but rather words such as mild, medium etc. Once you read enough posts here you will see that this disease of dementia is hard to pinpoint. That can be frustrating for caregivers. It seems to me that other ailments hasten the lifespan of a person. Although it may not bring you much relief I have to say again how nice it is to read how wonderful your mother has been. I do hope you have found some ways to help your situation.
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Hi Karyll, I could have written your post as our situations sound so similar. My Mom is 78 has dementia, Parkinsons, even rotator cuff issues due to one of her falls. I am experiencing everything you are. All the care required is the same. I am primary caregiver with some help from a sibling. Also in common is how I feel about caring for her and keeping her home. It’s hard but I want to do it as do you. I wish this site gave cities where we all live. I often think that some caregivers could be respite care for one and other. Come here and talk any time. I understand.
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karyll Mar 23, 2019
Hi, thank you for replying. How bad is your mother's dementia? My mother is really bad with short term memory and a short time ago she could remember much of the past when she was much younger. Her memory seems to have gotten worse lately. It is really hard at times caring for her but today I remembered all she did for me without ever a complaint even when I was going thru a bad time. I know much about the Bible and the hope we have so I'm not afraid if ever she should fall asleep in death. But still death is not natural and I don't want her to die. I just don't want her to suffer as she suffers now. Still I need a little time for myself but she hates for anyone else to stay with her. Do you ever go through anything like This? I'm thinking of posting a question about this to see if anyone else has any suggestions, thanks again and my best to you and your mother
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Hi Karyll
While my mom lived at home and did not have Alz/dementia I have lost a friend to Alz. In fact just this past year. She was in her 80s when I first noticed something was really wrong. She lived alone and had a good deal of help from her neighbors. She had a son who she thought the earth revolved around and she refused to let anyone “bother” him. To his credit he did step up the last few years and started her on hospice about 8 months beforre her death. I believe the hospice staff saved the DIL as she was really worn out with the care.
My friend also suffered with UTIs, in and out of the hospital, wouldn’t bathe without a battle, lost a lot of weight. She was basically nonverbal the last year or so. From reading these sites I know that Alz patients may go through predictable stages but they sometimes overlap and one patient may zoom through a stage that another one stays in for a long time. You may have noticed that.
I have an aunt, 92 with dementia, who lives alone but has daily aides. I manage her care and only do hands on when I’m filling in for someone. I live a couple of hours away. So, I’m not a fan of NHs either but do appreciate that it is sometimes necessary for all concerned.

Don’t think of hospice as giving up. Have them evaluate her for services. It will help. I have another aunt who has Parkinson’s and dementia and has done so much better since going on hospice. It’s been about a year now and my cousin who is the caretaker is a different person. It has been just enough help to make a difference. She was basically on her own caring for her mom and dad.
If your mom isn’t eligible now at least you can talk to hospice and learn where they believe her to be on her journey. You might try more than one before you find the right one.
Come back here and vent anytime.
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You at least have the good fortune to state that your mother was the best one could hope for. Many cannot feel that way. You don't state your mother's age. Also you don't indicate available finances. I understand you pay for some caregiving. Are you able to increase that even to a small degree so that you could accomplish more? It also is not clear as to the situation with your brother. Is he able to provide more assistance? I understood the pressure you must feel and think you are very thorough with all you do. Perhaps you might find a few ways to assist you further.
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97yroldmom Mar 20, 2019
She’s 90 Riverdale. In the subject.
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You have both done a great job but I think it may be time to consider full time care
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karyll Mar 20, 2019
You don't know our mother and she is still a wonderful person even with everything she is and has gone through.  No, this is not the time to consider full time care.  We can't afford it for one thing and my mother would not be happy with us out of her life.  If the time ever does come for us to consider full time care, we will have no choice.  But that time is not now.
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Hi karyll - You've been taking care of your mother for 6 years and you leave no time for yourself. No wonder you're so stressed out. Most likely burned out. I spent 2 years taking care of my Alz mother 24/7 and I nearly went out of my mind.

If your mother or you or your brother can spare more money to pay for outside help to come for more hours and more days, that would help you lower your stress level, and allow you to have some time to live your life outside of caring for your mother.

A few things I used to do to relax and unwind and NOT think about my mother's care:

Talk to friends.
Exercise
Read books
Get online to read or surf around the internet for whatever interests me.

Find whatever activities you like to do and make time for them so that you are not constantly in the caregiver's mode.

And you can come and vent here anytime you like so you can feel better.
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karyll Mar 20, 2019
Thank you so much for replying.  You seem to understand some of what I'm going through as you went through it yourself.  I feel even a bit guilty writing the post I did as my mother is still a wonderful mother but with her dementia she doesn't understand exactly how much time we spend caring for her.  She is 90 years old and we love her dearly and a lot of times she is not trouble as she spends time watching tv as we do what we have to at home.  Sometimes we watch tv with her so we don't leave her alone all the time.  Is your mother still alive?  If so, can you please tell me her age?  If she is not still alive, I'm sorry.  How long did she live?  Dementia and alz patients really are put through so much and it is really a heartbreaking sickness.  Thank you for the tips you gave and if you can think of anything else I would appreciate it.  The best to you.
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So sorry, looks like your post got lost in the shuffle. Bumping you up.

Sounds like Mom needs a lot of care. I understand wanting to keep her home but you realize that this desease gets worse and besides mentally you may not e able to care for he physically.
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karyll Mar 20, 2019
If my mother ever needs to be cared for in a better way than we can, we will know it.  But that time is not now.  If you are an expert on this disease, can you please tell me in what stages this disease gets worse?  At the present time we are able to care for her.  I have heard so many nightmares about NH's and how so many are unhappy to have put their loved ones there.  We did put my mother in a hospital last year in a unit to be strengthened after a bad UTI and to have physical therapy.  It was one of the worst experiences we've gone through.  She was having physical therapy at home prior to this and was some of the best PT we have seen.  But with us trying to help her to get better and put her in a unit, she received bad PT and bad care.  When we went to pick her up after her stay, we found her in her bed in urine clothes and no one caring for her so nice that I had thought of taking some clean clothes with us. 
I'm sorry, I have been through much but was looking for some suggestions at home and not telling me we  may not be able to care for her.  At this time we can care for her.
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