This Disease is So Strange

rpcasillas

My 90 year old ADLO has been living with me for over three years now. The disease has definitely progressed over time but until now, she has had some level of cognitive ability and enough strength to perform normal daily functions (eating, sitting walking with assistance, going to the bathroom on her own, etc.) . Her appetite has always been pretty good and she is able to get around on her own for the most part, with a cane/walker. Her sleep pattern is all over the place but generally, she gets at least six hours of slumber every night. She recognizes family and friends and has had some level of quality of life. She can still enjoy people and nature is what I am trying to convey. That said, it has just been within the past week that she has taken a turn. She has been having serious problems with merely standing up straight and walking very short distances. A few times she simply "folded over" when getting up from her bed or chair (actually, a few times she slumped over in her chair and I had to prop her up with pillows, etc.).  Getting her to eat three meals in a day has become more of a chore. Over these past few days she has become more incoherent and confused in general. She needs more assistance with going to the bathroom, bathing, eating, etc. and she wants to lay down more often. One day in particular she was really bad but then the next day she seemed a little better and was more autnomous. The day after, she was bad again. I know there are other caregivers out there who have had this similar experience. I am so scared for what me and my family are facing in our immediate future and of course I worry about my mom's future suffereing with this horrid disease as it progresses. What does all this mean? Insights, words of wisdom and/or advice would be greatly appreciated.

SusanB-dil

Hi rpcasillas - mil has vascular and alz, so will be on a steady plateau for quite some time, and then suddenly take a turn. (We have been calling them like 'stairsteps'.) We think it could be yet another TIA.  However, none of the turns have been that drastic - except once - and it turned out she did have a UTI.  I would check with her prime-doc, and tell them of this sudden turn, and possibly check for UTI in the meantime, and there are probably other things that could have caused the sudden drop.

mil doc has said that due to the vascular, and the tia issues, a major stroke could be imminent.  UUUGHH!!  

I agree - I just find this all so hard, bizarre, frustrating... !!  just sayin'.  

zauberflote

Definitely start by checking for UTI, and make sure a culture is ordered as well.

Beauchene105

I felt like I was reading a description of my own mother's progression into dementia. In a nutshell: there are good days, and there are bad days.

mommyandme (m&m)

If she continues on this path a call for a hospice evaluation may be something to consider. 

Very sorry for your worries. 

mrs. Carrillo

Going thru some of the same issues with my 82 year old mom. She has been living with my husband and I since February when she ran off her caretaker for the second time accusing her of stealing from her (water bottles, blush, lipsticks).   She has good days and her bad days are just awful.  its usually with me she doesn't like me very much because in her mind I'm taking her money, never cook for her! This morning she refused to take her medications so I had to call one of my brothers he begged her to take them and she did.    I  do everything for her to try and make her happy.   Family members and friends tell me I may be doing to much for her.

Sugarpill

Thank you for sharing your story. I am in agreeance with some of the others here - please have her checked for a UTI. They can wreak havoc in the elderly. My father recently suffered a UTI. One day he was more confused than normal, not able to comprehend basic direction. The next, he was more lively and understanding. Two days later I had to call EMS and have him taken to the hospital because he wouldn't even respond to me. It's a very scary experience, but easy to remedy. I wish you luck.

Stori

I feel like dementia is a grenade. It doesn't just hurt the patient but everyone around them, caregivers, family, even medical providers get hit with shrapnel.  I'm sure Huntington's is similar. And others I don't know of. 

It makes everything so difficult. 

I'm so worried about my mom because she gets up when my dad is sundowning and gets dressed at 2am. She is always working around the house limping because of bad knees. I'm scared she's going to collapse. She's almost 80. But she insists. 

I read that 40% of dementia caregivers die caring for their loved ones. 

That's horrifying. 

It's been an extremely difficult year and especially the past two months. We haven't had a day or night off since 2019. It's unreal what we do. 

Regina312

I'm sorry I was away from this site and did not respond timely, but do see that others have offered some suggestions.  As by now, I am sure you have seeked medical advice, but yes most definitely always check for the UTI.  During my Mom's illness, she seemed to get them more frequently and it is amazing how that infection seems to really effect the Alzheimer's patient.  It is without a doubt a very devastating disease and heartbreaking to watch your loved one just fade away.  My Mom also had good days and bad ones.  When she took the turn, it was very quick.  My Mom was diagnosed in 2007.  In 2012, she took that turn and she was like a whole different person.  Sadly she passed in 2015.  I was her primary caregiver and it was a long, tough battle.  I support this organization because I hope for a cure one day.  I participate in these message boards because I received much support from others during my Mom's illness.  I wish you all the best.

Nutty623

Hi rpcassilas,

I am going through the same exact thing with my mother. She had problems walking and standing up straight for three weeks, her appetite dropped so bad I have had to sit with her through every meal to make sure she is eating and I provide her snacks throughout the day because she isn't interested in meals. I have become more vigilant since she lost 10 lbs. In 2⁸ months. During this time she seemed very confused and began hullicinating. She has improved this week but I don't know why. I have made sure she is eating more throughout the day and I sit and talk with her more. I don't know if that matters. Maybe the symptoms just fluctuate.

rpcasillas

Hello, thanks for all of the responses. No, UTI. She's been slowly declining, more so with her cognitive abilities and also physical of course, but she can still laugh, recognize me and others close to her. I feel myself getting more frustrated at this whole situation and feeling sorry for her, for me, for my husband. My feelings go all over the place.