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wickedglitter
Posted: Monday, January 30, 2012 2:40 PM
Joined: 1/27/2012
Posts: 383


Hello,

 

I recently started caring for my mother a month ago. She has dementia. She can still dress herself, eats well, and is a happy go lucky person. She knows she needs to be here but she is constantly talking about her "friends" ( people around the apartment complex like the maintenance guys or close neighbors who would talk to her or in some cases take advantage of her giving generosity ) 

She has no concept of time, I'll tell her something is happening next month but she will ask me every other day when it's happening. She will tisk and tell me "well its already been a long time!" She had no concept of money anymore ( she handed the store clerk at the corner store 200$ and asked if it was enough to buy bread and toilet paper )  I took her to the neurologist and he said she has brain atrophy and can see it shrinking and some scar tissue I guess probably from her high blood pressure. She did really bad on the cognitive tests, I am not sure of her dementia level though, I  get so flustered when I take her to the doctor trying to keep my emotions in check. 

The doctor gave her Exelon patches and we have a followup appointment next month. I did not like the neurologist I went to, he seemed very nonchalant and seemed like well, lets give her this and there you go. No roadmap, no clinical trial talk, nothing! I live in Houston, Texas which is a big mecca of great hospitals and stuff. I was floored and the office nurses were so rude to me ( telling me it would take a week to fill out my fmla forms for work, I asked them if I could have a note for my employer stating it would take that long and she was like no i can't do that, and then backpeddled and said it may not take a full week. ) 

Rawr. Ok I need to breathe.

My mom is 63. She has Champ VA benefits for insurance and too young for medicare so I am kind of stuck right now. My mom is used to being out of her apartment, she was wandering around visiting different neighbors who she called friends, but were probably just concerned about her or in most cases, tried to see what things they could get from her. So much of her jewelry and other things she used to have are gone. I know she gave them to people who probably said "that's really pretty" . 

I've been reading up on "sundowning". Since my mom has only been with me a month, I didn't know back home how bad her dementia was, she lived 700 miles away from me and my brother would "check in" on her. When I found out she was out wandering around, randomly showing pictures of her grand daughter ( my niece ) to random strangers and telling people where she lived, I knew it would only be a matter of time before she happened upon a not so nice stranger. I just had my brother put her on a plane to Houston and let him sort out her stuff at the apartment. Anyhow, last night my mom seemed extremely confused, since it gets dark here around 6pm and she decided to go to bed. She got dressed and woke up at 1 am and was extremely grumpy and combative which is not like her. I told her she needed to go back to sleep because it was 1 am, she gave me a fierce look and said "No, why should I have to do that, I can do what I want!" it made my stomach sink. I know its just her confusion and dementia talking but I fight back tears as I write this because that's just not my mom you know?

She was really paranoid at night to go to the restroom, I had to throw out her wastebasket in her room because she decided one night either out of anxiety to leave the room or confusion that she would pee in the trashcan instead of going to the restroom. The restroom is directly across the hall from her room, it is literally 6 steps away. The incident hasn't repeated itself (I haven't put a trashcan back in her room) and hopefully it will stay that way. 

I read melatonin before bed can help, but is there some type of medication I should be seeking out for her when I take her back to the doctor?

These boards are bittersweet. I am comforted to know I am not alone in this, that there are people who are grieving the loss of someone who is still here but not the same, who cry when it seems like you can't take another minute and are feeling very overwhelmed. I keep asking my husband how am I going to do this, I just started and I already feel so overwhelmed!! He says I have to do it and that I will, and he has been very supportive. He doesn't fully understand and is never going to unless it happens to him, which I pray to God it doesn't . I wonder if I will get like this, it scares me. I would never wish this upon my worst enemy. It is hard. I fought cancer and I'd rather fight cancer 3 x over than go through this. It sounds harsh I know but this place is for venting right?

I'm sad because the best adult daycare facility is on the other side of the city 32 miles from me. I've looked up my chapter online and I don't see any "events". I'd love to take my mom to an icecream social or dance or something for Alz/Dementia patients. I can't help but wonder why there are no events like these . It is a lonely illness. I feel ashamed because I can't invite anyone over. If I do my mom will start on her stories and dominates the conversation. She will start talking about things that make no sense or talks about the same thing over and over again. I feel like a horrible person for not wanting to take her around anyone, but its to save her the embarrassment, myself the embarrassment and making strangers or friends feel awkward or uncomfortable. 

Thank you for letting me vent. Stay strong everyone. Breathe and take it a day at a time. Sometimes that's too much, just make it to the next second, the next minute and keep putting one foot in front of the other.


~ Tasha


MrsG
Posted: Monday, January 30, 2012 4:10 PM
Joined: 12/15/2011
Posts: 47


Hi, this is a long journey you are on with your mom. If you are not happy with the Neuro she is with, definitely see if there are other options to change drs. In the area you are in there are a lot of opts as far as drs and there may be one you are more comfortable with that is covered with your moms insurance.

 

FMLA paperwork is not that difficult to fill out, I would gently remind the drs office to make sure you get them as soon as possible.

 

Don't be ashamed. Good friends and family should be made aware of particulars if you see fit but don't isolate yourself right now. With this disease it is going to get worse. Her behaviors more than likely will get worse, more child like in manner. Nothing to be ashamed of, your mom can't help it.

 

When I used to take mom out to eat or some other function. I made sure it was early enough so she wasn't tired, later in the day would cause worse reaction because she was tired and sundowning. Short visits, small trips, nothing with too much excitement or too many people for her sake. I really didn't care what others around me thought. SHe has an illness.

 

Really, try to form a supportive circle now. You are going to need it as this disease advances. Many of us here know the lonely road this disease will take us on.

 

There are not a lot of people that fully understand how this disesase changes not only our loved ones but the caregiver as well. So many things you will not have time or energy to do. Start now by looking at other options for giving yourself a break, respite, daycare, etc.

 

Visit here with any questions or vents. There are so many people here with so much experience. Sometimes just knowing someone else is going thru the same challenges helps.

 

Take care.


dj okay
Posted: Monday, January 30, 2012 8:24 PM
Joined: 11/29/2011
Posts: 1840


Welcome, Wickedglitter!

 

I'm sorry you are so sad.  This disease can drag us down and it's hard to keep your chin up.  But somehow we have to find a way that works for us.  There are a lot of folks here that have found what works for them and are willing to share their stories.

 

I have been in this online community for over 4 years and I've been a Peer Volunteer for over 2 years.  I felt I wanted to give back some of the support I feel I've received from the wonderful folks here.  Many have lost their loved ones and moved on to the other parts of their lives.  Some stay around to help others...thank goodness for them.  There are so many newcomers and it seems our ranks are growing at astronomical rates.  Thank goodness we have this forum to share with one another!

 

You can read about the stages of the disease at these sites:

Stages of Alzheimer's

http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp 

http://www.alzinfo.org/clinical-stages-of-alzheimers-disease.asp 

 

 

I can't advise on specific meds you should ask about.  You should describe in detail the symptoms she's displaying that you need help with.  It is best if you can list specific examples for the doctor.  Instead of saying she is agitated in the evening, it's better to say "She walked the floor for 3 hours (4-7pm) without a break and refused to watch TV which she always loved."  Try to fax your list to the doctor's office prior to her appointment and take a copy with you just in case.  Ask when you arrive if the doctor has read the fax and if not, give them the copy.  Make sure you print in large letters at the top not to share these specifics in front of your mother.  Any doctor worth his salt will abide by your wishes and respect the dignity of his patient.  At the bottom of the fax you can ask the question "What medication(s) can help with these symptoms?"

 

I hope you find lots of support here.  Come often and let us know how you're doing.