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My 59yr old mother with ealy onset of alzheimers
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mfsf4eva posted:
I am a 36yr mother of 3 boys ages 18,14 and 3yrs old.I have took on the care of my 59yr. old mother with early onset of alzheimers she has been diagnosed with haveing it now for 9yrs.I have been takeing care of her for 6months now and I dont know which way to turn anymore this is more difficult than i could have ever imagined.There is no way i would be able to do this without the support of my husband I am very thankful for him but im at a point i just dont know what to do.My mom is getting worse and it feels like its hurting my family, my mom begged me 3yrs ago not to have her put in a home her sister and father have been keeping her up until 6 months ago when they were done going through her money and her sickness was getting worse I am now going through the courts to battle them in what they have done but for now im tring to take care of her the best way i can.My mom was abused by my father for 30yrs she got a divorce 7yrs ago and has fell downhill quickly we believe this was the reason for the early and such heavy onset of the disease.Me and my mom never had a close relationship and for now to try to have that is impossible she doesnt even know who i am anymore calls me her mom my kids call her grandma and she gets mad says quit calling me that im not no grandma the kids get upset says yes you are our grandmother. She is very aggravated all the time she is soo mean everything we do gets on her nerves we built the garage into a small apartment for her to be away from all the commotion of our family but she refuses to go in there i have moved my brother in to help me with her also.We can nolonger go as a family anymore someone has to always be here with her its almost impossible to take her anywhere with us for the way she acts out and wants to go back home.She doesnt sleep for days will pace back and forth for hours starting arguements with my 3yr old constantly.She now has started looseing control of her urine and bowels.She is ONLY 59 i just cant put her somewhere at this point i couldnt live with it in my heart knowing i did.I feel that i will know when the time is right if it comes to that but for my husband comeing from such a close family he doesnt want this even discussed in our home says we will take care of her till the end and thats the end not to talk of this again thats why im on here talking to you all thats going through this i just dont know what to do my kids hate it we cant live normal anymore.I have notice myself slipping into depression im tring to take care of 3 children, i run my own cleaning business work up to 6 days a week and take care of my mother in the evenings after work and weekends while my brother gets a break but for me there is none....i have picked up scrapbooking it does seem to help me clear my mind when things are getting ruffer than usual at times but here lately since mom has gone for the worse i cant find time to even sitdown to it anymore.I love my mom i respect her highly she worked hard while my dad didnt he got disability when i was a child drank heavily and mostly mentally abused us it was an everyday thing as we got older and moved away my mom got the worse of it as he got heavier into the alcohol and then on to drugs this is when it got more physical.My mom was always a sweet woman and now omg is she MEAN as i dont know what i just pray she doesnt get violent specially whith me haveing children thats where i will have to draw a line but for the meantime im just takeing day by day and scared for what tomorrow may possibly bring.Keeping my faith and prayers has been #1 i must say
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cjh1203 responded:
Your situation sounds so sad and frustrating.

Is your mother taking medication for her Alzheimer's? Does her doctor know about her behavior? There are medications doctors can try to improve the mood of Alzheimer's patients.

Aside from talking to her doctor, I think the first thing to do is talk to someone at your local Alzheimer's Association as soon as possible. Explain everything that you've said here. Even though I know you feel very alone, these are things they have dealt with before and they can give you some good advice and resources. The Alzheimer's Association also has support groups that can make a world of difference.

I know your mother is very young to have this disease (she's a year younger than I am), but you can't let her age figure into your decisions about caring for her. It sounds like the current arrangement isn't working for anyone, so you may need to consider placing your mom in a memory-care facility, especially because you have three young children to consider.

That is an extremely difficult decision to make, I know, but please keep it as an option. A couple of years ago, I talked to a nurse who was a case manager for Alzheimer's patients. She had worked with Alzheimer's patients and their families for 30 years. She told me that almost 100% of the families did not want to put their loved ones in a facility because they felt it was a betrayal, or that they should be able to take care of the patient at home. She said that, almost without exception, the patient did much better and was happier once he or she had a little time to adjust to the new surroundings and routine. They need the structure and routine a facility can provide, and they make friends with people who are like them. The facilities provide great activities and entertainment for them, too.

Routine is key for an Alzheimer's patient -- it's probably the most important thing for them -- and it would be difficult to provide that in a lively household. Lots of activity and chaos is overwhelming for people with Alzheimer's, and the normal hubbub of a house with three children may just be too much for your mom, and cause her to become agitated and mean.

Please contact your Alzheimer's Association and ask them for help. I hope you will also continue to come here -- we will give you whatever advice and support we can. Even without having three young children and a full-time business, caregiving is one of the most difficult jobs there is. If things continue as they are, it will start affecting your health, and then it will be hard for you to help anyone. Your own health and well-being have to be a priority.

Best wishes.

Carol
 
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mfsf4eva replied to cjh1203's response:
thanks this was very helpful made me cry actually i have talked to her doctor and we are tring to manage her anxiety at the moment she is on medicine for alzheimers she is actually on the highest dose there is no other resort at this point for medication for this disease.Her doctor feels if we put her somewhere at this point her health would decline rapidly i just went to court a couple weeks ago cause her sister and father were tring to put her in a nursing home and the judge said it wasnt an option she is only 59 i was granted guardianship and she is to reside with me but i am going to check into a memory care facility in our area.also get in contact with the alzheimers association believe that would be a huge help cause i dont know where to even begin with all of this i heard there very helpful.and YES i will continue to to come here for support think i need it very much takeing care of her and the way she does things and the things she says hurts it really gets to me i try to keep reminding myself she is sick and cant help the things she says but its almost like she knows what to say to get to me idk sometimes it seems to play with my head get under my skin and really get me upset.I also fear if i have her put somewhere that i wont be able to go visit her wont be able to face her knowing i put her there against her wishes but looking at it like you put it makes me feel almost even worse thinking that i could be makeing her sickness worse just being here with my household of chaos it cant be helping at all i believe this is why we are haveing to manage her anxiety at the moment cause she cant cope with all the commotion around her but i felt it was family something she needed to be surrounded by thought this was what it would take to make her better was the love i have for her and me careing for her everyneed would make some improvement but its not,not at all...guess really and honestly was tring to have that mother daughter relationship we never had last chance to get it and its just not possible felt in my heart with faith and prayer all things are possible through god, guess with our past history what all we have been through makes this whole situation alot harder just feel like im bout to have a mental breakdown thank you !!
 
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cjh1203 replied to mfsf4eva's response:
I feel terrible that my post made you cry and feel guilty. I didn't intend that at all.

It's definitely worth checking out some memory-care facilities. If you were to decide to go ahead with that, the people who work there could help you and your mom with the transition -- most of their residents probably come to them under very similar circumstances to yours.

If you don't feel that's an option, can you bring in someone to help you for at least a few hours a day?

You don't have anything to feel guilty about at all. You're being a kind and loving daughter, and doing everything you possibly can for your mother. It's not your fault that a house with three children isn't peaceful and calm -- that's just the way life is.

I think that one of the very frustrating things that family members of Alzheimer's patients face is that there's a whole different logic to life than you think there should be. Your mom is just incapable of reacting to a lot of things the way she should, or the way you hope she will.

I'm so sorry that you and she didn't have a good relationship earlier in your lives, and I'm sure that it does make it really hard for you to realize that it may not happen now.

Just keep reminding yourself that it's not your mom acting like this -- it's her disease. I know that's a tough thing to remember sometimes. A lot of people get mean and difficult when they have Alzheimer's, but you can't take it personally. Even when you know it's not really her, though, I know it's hard not to be hurt sometimes.

I'm so glad you're going to get in touch with the Alzheimer's Association. Maybe it would be good for you to see your doctor, too -- he or she might be able to prescribe something to help you get through this rough time.

Be kind to yourself. You're in one of the most stressful, heartbreaking situations anyone can face, and you're being the best daughter anyone could hope for.

Carol
 
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davedsel57 responded:
Hello.

I just want to say that I fully understand what you are going through. Carol has already given you excellent advice as usual. Getting my dad the care he needed early last year was the hardest thing I have ever had to do in my life. It is still a daunting task to be the responsible person for his care, but I know it has to be done. After several different facilities we have finally found the right place for my dad.

Please consider all the advice Carol has given you, and keep us updated.

I will be praying you find the right answers for you mom.
Click on my user name or avatar picture to read my story.

Blessings, Dave
 
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Judith L London, PhD replied to mfsf4eva's response:
Hi,

You are so sandwiched in between the needs of your children and husband and the needs of your mother. In my professional opinion, you have done everything a daughter can do for her mother. Alzheimer's is a cruel disease but it is important that you stay intact and not be ravaged by Alzheimer's the way that your mother is.

I suggest that you limit the victims of Alzheimer's by placing your mother in a memory care residence. Not only would she benefit by having people around her who know how to deal with her moods and behavior, but she will have people to relate to.

Often people with this disease say - don't put me in a nursing home - but in truth, they forget they ever say that and if they knew how their behavior was affecting their children and grandchildren, they would change their minds. Often, they do better in a memory care setting.

Alzheimer's is damaging your mother's ability to reason but both you, your husband and brother are able to reason. Use your good sense to look at the bigger picture. Get advice from the Alzheimer's Assn., 800-272-3900.

I lead support groups consisiting of the relatives of those who have placed their loved ones in a memory care facility. Get some help from those who know what it's like.

We feel for you,

Judy
 
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kdg68 responded:
Your post really touched me. I am currently going through a very similar situation but I am a few steps ahead of you. I'm 44 years old with 4 kids. My father is 64. He was diagnosed with dementia about 6 1/2 years ago. About a year ago he was living in a trailer home about 15 minutes from my home. I moved him there from his childhood home to let him have his independence and be close by in case I was needed. Around Aug '11 we were due to have a hurricane pass through our county. I brought my dad to our house to make sure he was safe. Luckily I did because a tree fell into his trailer. But while he was here with us, we realized he had progressed to the point where he needed to have someone look after him. We decided to keep him with us. That was the hardest 8 months of my life. It affected my entire family. My dad has always been the nicest, kindest man but his behavior had changed. He was yelling at my kids, moving things around, hiding things in the house that didn't belong to him. He was hallucinating and just very agitated all the time. We couldn't take him anywhere and couldn't leave him alone so we always had to either not go anywhere as a family or find someone willing to watch him for a few hours. I am fortunate to have a lot of family support but I felt like he is my responsibility and I needed to be the one to take on most of the burden. Like you, I felt strongly about putting him into any type of facility. I am a daddy's girl and putting him into a home was not an option. But the more the behavior continued the more I realized he needed more care than I could provide. I was always tired and angry and resentful. A friend of mine told me something that really stuck with me. I had become the caregiver and could not be just his loving daughter. I went to the department of aging and all they could tell me was either hire a nurse or put him in a adult daycare facility for a couple of hours to get a break. That wasn't possible so we finally started checking out assisted living facilities. We finally found a place that we felt comfortable with and he went into the facility in March. I felt so guilty and lost sleep worrying about how he was going to be. I know he never wanted to be in a nursing home but I also know he would never want to put me and his grandkids through what we were going through. He loves us more than anything and I just had to do what was best for him and us. I felt selfish and like a failure at first because I couldn't take care of him like I should have. But after a couple of weeks in the facility he was making friends and seemed to be a little calmer. When I went to visit, he didn't always know my name but you could tell by his eyes that he knew I belonged to him. I was more relaxed and rested and I could just enjoy the time with my dad instead of constantly stressing over what needed to be done for him. The place he is in now is a wonderful place that cares and knows how to handle his behavior. Keep in mind they also have shifts so they are able to live their own lives also which is very important. I completely understand the feelings you are having right now but I can promise you this, you are a great daughter to even try to take care of your mom. A lot of people don't even do that and having lived with someone with Alzheimer's I know how hard it is. My advice to you is to seek as much help as you possibly can and let go of those guilt feelings. Your mom in her heart would understand that you have done the best you can and you will continue to do the best for her even if it is to put her in a facility that can give her the care she needs. Then you can go back to being the daughter and not the caregiver. You can enjoy the moments with your mom that unfortunately with this disease don't come often enough and build the relationship that will put your heart at peace. Stay strong and have faith. That's all you can do with this horrible disease.
 
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cjh1203 replied to kdg68's response:
That's a wonderful post, kdg68. I wish that everyone facing the unrelenting stress and guilt of caregiving could read this, and give themselves a break.

Thank you for sharing your experiences and feelings.

Carol


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