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Struggling with caregiving responsibilities
Posted: Saturday, August 24, 2019 11:17 PM
Joined: 8/24/2019
Posts: 5

Hello all, 

I am a full time caregiver of my grandmother who is 65 and has been diagnosed with FTD. The doctors I have spoke with have informed me that it is absolutely necessary she be placed in a MC facility. Additionally, she suffers from paranoia, hallucinations and increased aggression since the diagnosis was made aware to her. The reason I am posting in the forum is mainly to vent.. I don't know what to do anymore. I had to go back to work full time, just to get a break during the day, and I am constantly struggling with the care she needs. I do not have POA since she is not competent to sign that document, and guardianship would take a while, which the attorney says is not worth it. She is believed to be in MS FTD, which is why they suggested a MC unit. Everywhere I have checked is full and the waiting lists are 6 to 7 months away... I guess I don't know if I can do this anymore (physically I know I can't as I have a disability of my own), mentally (it's exhausting and I'm constantly stressed and overwhelmed), financially (it takes a toll on me to handle her money, since she thinks I steal it all the time), et al. Is it wrong of me to want to abandon her completely, since it seems the resources I am in contact with haven't been much help with finding placement? Is it wrong of me to look for my own apartment just so I can escape? What are your experiences with sleep problems? (The reason I ask is I have noticed lately that she will sleep with her bedroom light on ALL night, and it frustrates me because she refuses to help pay the bills due to her paranoia, so it all falls on me, as usual).. She blames me for everything, and I am just so sick and tired of it. I just want out. What can I do?     

Posted: Sunday, August 25, 2019 2:04 AM
Joined: 8/25/2019
Posts: 8

Hi! Kevinescence,
I'm so very sorry for your difficulties lately!

Specific to your inquiry on sleep patterns, my father-in-law's pattern has changed dramatically. He's always been a napper (1 hour mid-day), and used to get up once a night and make a hot drink. That's pretty common, and not abnormal.

Over the past few months, his naps became 2-3 hours long mid-day. More often now, twice during the day. And at night, he's up puttering around the kitchen 2-3 times. I awaken every time because we have a gas stove, and once he left a plastic spoon leaning on a fry pan that caught fire. (So, we may get a discreet gas shut-off for night time soon.) 

I read that with Alzheimer's, sleeping during the day longer and longer is common - and so is the wakefulness/erratic sleep at night. In case that helps.

Best wishes to you!

Greg G
Posted: Sunday, August 25, 2019 6:43 PM
Joined: 2/8/2017
Posts: 984

Hey Kevin,

Welcome to our wonderfully whacky world we call dementia.  I am so sorry you have to join us.

A couple of red flags popped up while reading your post.  If you are taking care of and living with your grandmother, where are her children?  It is really their responsibility to do the job you are doing.  

Gaining DPOA over grandma can make for some "interesting" conversations with her other heirs if they are still alive.  There are entirely BAD situations when one family member is trying to get DPOA for all the right reasons but gets attacked by the others not lifting a hand to help or criticizing all the time.  So you need to be careful about that.

If things are really at the point where you can not do this caregiving (mentally and physically), there are options.  Not very nice ones but options never the less.  A while back on this board was a young woman who's mom was a "challenge" to help with the mom's dementia.  This woman quit her job in California, had hubby quit his, packed their cat up and moved to Hawaii to take care of mom.  They had no jobs in "Paradise," no place to live except with mom, very little money and the cat was in quarantine for 30 days.  Mom was aggressive, confrontational, mean, you name it.  She didn't have any money either.  They were kicked out of a couple apartments because of mom's actions.  All the while daughter was trying her best.  Long story short, daughter had to turn the care of mom over to the State of Hawaii.  Mom became a ward of the state.  Really a sad situation but daughter had run out of options.

Hope your situation doesn't come to this.  But you need help and if the rest of the family will not help, your choices are limited.  There are a bunch of folks here who have successfully taken care of a loved one with dementia at home.  But they have a TEAM of support players assisting them.  The old saying "it takes a village."  

Depending on what your relatives do or say, at meeting with an certified elder care lawyer may be in your future.  However they are not cheap so if you do plan to meet with one, prepare all your questions ahead of time on paper so there is no "wasted" time while the clock is running.

Good luck and best wishes, Greg

Posted: Sunday, August 25, 2019 7:03 PM
Joined: 8/11/2019
Posts: 39

What kind of medicine is she taking?  Sometimes the medicine can cause a lot of issues.   My dad got aggressive when we put him on Namenda.   Once we took him off, the aggression went away.   Currently my father is on levothyroxine and I think that is causing him anxiety attacks.  It seems like doctors just want to prescribe stuff and not pay attention to what side effects it can cause.
Posted: Sunday, August 25, 2019 8:03 PM
Joined: 8/13/2019
Posts: 2

I am very sorry to hear all you are facing.

I face similar challenges with "my mother," in the caregiving role.  I am the only daughter, and I have become the sole person to provide for her.  I love her so much  but her disease is killing me ALSO.  I am angry at my 2 brothers, who do not call, visit or even talk to me.  I feel no respect or appreciation from them.  I lost all emotions toward my siblings.

My dad is alive and with my mom, but they are older in age.  My dad tries so hard to help me, but most of him is closed off to TRYING TO UNDERSTAND MOM OR THE DISEASE.  i not only care for mom, but try to educate dad.

I have long passed burn-out

I was hospitalized a few months ago; weighing 98lbs, severely malnourished and dehydrated, my heart and blood pressure at risk. My emotional state unstable and completely exhausted.  As I think back, I still cannot believe I survived that time period.

I only know how to take care of others, but NOT ME.

I do fear I will fall again. I do not know how my family can continue watching me fall away, beside my mother.....and not want to help.  She cannot help what life has done to her.

I hurt. I grieve. I am angry. I need help.  I long for answers.  I hate Dementia.  I am so tired.


Posted: Sunday, August 25, 2019 8:34 PM
Joined: 7/12/2017
Posts: 1778

Okay let go fo the guilt and save yourself, tell her kids, your parents, if they are around, you are giving two months notice to moving out and then do it...make them step up
Posted: Sunday, August 25, 2019 11:25 PM
Joined: 8/23/2019
Posts: 2

I feel your pain, as I’m right there with you. I’m 64 taking care of my 83 year old mother. I get a daily tongue lashing, accused of hiding/stealing/refusing to give her her money. She made me her POA and I wish I’d never agreed. I want to run and hide. My life had just started to go my way and now this BS...and it is BS to try to do this alone. Last week she told a clerk in the store I hit her...she had had cataract surgery the day before. I was mortified and almost got in my car and drove away. I’d like to tell you to hang in there but I’m not doing a very good job of it myself. At least my mom is in assisted living so I get to come home.