Advice on coping

[sml615]

My mother has had all the classic Alzheimer's symptoms for the last 5 years.  My father has been in denial and would not get her tested or make accommodations.  He was just sure if she would be more active she would "remember" more.  The family doctor could tell and put her on Namenda (don't know if I spelled it right).  I think that has slowed her progress.  However, she has become increasingly distant, inactive, and was actually hospitalized in Feb. for dehydration and malnourishment.  She spent time in the hospital and then in rehab.  It was at the time I finally convinced my father to have her tested.  The hospital staff and rehab staff were shocked that she was still at home and had never been formally diagnosed.  The psycho neurologist testing showed Alzheimer's and the doctor recommended 24 hour supervision.  They said she should just not ever be left at home alone and they encouraged assisted living but also told my Dad if he had home health care that would be OK.  I have been trying to get them to move in with me but my Dad really wants to remain independent.  They have elder care help 3 days a week so he can go to the grocery and things like that.  So lately my mother is becoming very unhappy with this arrangement.  She wants to be left alone.  She insists she can do for her self.  She refuses to bath on her own and is very unhappy and argumentative when the home helper tries to bath her.  Same if I try to help her bathe.  I let her do as much as she can and really I am just there to make sure she doesn't fall and that she actually takes her cloths off before getting in the water and doesn't turn on the water too hot...things like that.  Bottom line is that she just is so unhappy and insistent she is fine and wants to be alone every day.  I do not know if she understands her condition  I do not know if I should ask her.  She cannot remember what she has done each day, what she had for dinner or even if she has eaten.  She can "fake" a conversation by asking me how my day was and what I did but as soon as I tell her she asks the same thing again.  Multiple times asking the same question in a row.  Can she be alone?  I don't know what to do.  My Dad does a pretty good job with her and I am thankful for him but he is tired and weary.  He is 87 and has had a septuple bypass.  One of the things she was asked in rehab was what to do if there is an emergency.  She never did get it right to call 911.  She kept giving her home phone number or her social security number.  One time she did say 411 which is close.  I know I am rambling but I just don't know how to explain this to anyone and I don't know what to do.  
Thanks for reading!!

[sml615]

Wow have things changed since these posts.  Dad had an episode of congestive heart failure and still undiagnosed lung and stomach issues.  He has been in a rehab facility and mom us living with me.  We had been remodeling a 1400 sq foot area in our house so they could move in.  The project was almost finished when he got sick.  Mom of course cannot stay in the space alone so she is on the main level with me.  I work and I have been piecing together caregiver schedules, taking dad to appointment after appointment, test after test..... I am at my breaking point.  I enrolled mom in adult daycare and she starts next week.  I have no clue how she will handle it.  She doesn't  understand why she is living with me or where the apartment is in our house.  She frequently says "I don't know where I live".  I feel so bad for her but she must ask me 100 or more times a day where dad is and why he is there.  She is ALWAYS cold.  Our house is like a furnace.  I can't breath!  We burn the fire place, the heat is up, she has on layers of cloths and sits under a blanket. She is sure she always feels a draft.  She doesn't believe me when I say the heat is on.  Meanwhile I am sweating.  We are hooked up with an organization that deals with problems of memory care patients and I think it will help but taking care of mom AND dad is too much.  I can't quit my job.   I thought I could handle this.  I wanted to handle it because they are my parents and I love them but I guess I am a failure because I just am not sure I can keep up.  Sorry for venting!!!! I mainly wanted to know if anyone has the same issue with the temperature thing.  Is anyone else's loved one always cold????

[heartfluttersflyawayplz]

How are things going . Prayers for her and family

[sml615]

Thank you so much for your responses.  It is heartbreaking to hear your stories yet comforting to know we are all not alone.  I downloaded the free book Understanding Dementia and I also found out there is a name for not thinking there is anything wrong with you.  This is clearly what is happening to my Mom.  We have the elder care in now and I am slowly getting Dad to read more on this and take more breaks and learn how to deal with this.  It will be a matter of who can hold out the longest I think.    Either he will realize he can't handle it or she will get bad enough that she has to be cared for somewhere else.  I am dreading it.  I just want my Dad to be OK and Mom to be safe.  She has been lost to me but I found her in the pages of that book I downloaded.  Every page was what we are going through and every post here reminds me of it.  Bless you all for your journeys and your willingness to share!

[heartfluttersflyawayplz]

it makes me so sad to read this, as i went threw the same thing your going threw.

my mom was the same, she didn't want anyone looking after her and at 68 when she really got where she needed help she also knew she was older than me and i was not her mom she was mine.
they don't see and know what they are doing so they don't think they need help,

my mom and dad lived in our basement so i would go up and down stairs to see what she was doing, i would just tell her i was coming to visit or i needed some thing like sugar lol it worked

i would get her to help me to keep her busy so she would think she was doing it myself, like i would give her a big basket of clothes to fold it would take her awhile and i would go up-stairs for a little while than go back and she still be folding or trying put them up but it made her feel like she was a person and she enjoyed doing stuff like that

now my dad no he had no patience with her, and they would fight over everything and it just made her worse

you have to live in her world now, as she sees it all different than we do, things become scary to them, like the dark, even my dad was scary to her things change for them

i would say let her do as much as she can as long as she's not in danger or ya,   mom took baths but i would stand outside the shower in case she needed me that made her feel like she was doing it on her on, so sad what this disease  does to people.

keep a watch for any signs of uti, if she gets one it really messes them up worse, if she's not drinking lots a day she can get them easy and it makes them so so much worse
  i went threw moms journey from start till she passed in my home. i would not take anything for it, i was so BLESSED by her being in my home.

me and my Dad took care of her , had home care come in 3 times a week and give her a bath , when she got bed ridden,

spend each moment you can with her take in all she says,   i wish i had recorded her when she would talk to me , i would love to hear her voice now and hear her tell me she loved me,

always here to talk ,,,,Heart

[rumpled]

We had a similar situation when my MIL was diagnosed. My FIL was in total denial. He wanted her to get better and thought he could take care of her at home.

As dementia kinda waxes and wanes, there are lucid times, but when it comes to the times when your mom needs more physical support, things may get, sadly, worse.

In our case, my FIL was a very nasty man. So there was no really going against him without a huge fight as he was always right. My MIL paid with her life for this. She developed bedsores and progressed very quickly in the end without the support she needed. We had to constantly fight to get the right nutrition, bathing and everything - he just wanted her to sit and be quiet. In the end, she got aspiration pneumonia and died. He paid a price as the cost to him for trying to take care of her caused him to lose his health as well.

I know it has a lot to do with personality, money and all, so you have to decide if you want to take on the battle. I suggest you visit some local support groups and gather some resources, as well as get the legal ducks in order (which my paranoid FIL took as we wanted all his money...).

So, you have a lot of decisions to make. It is not easy!