First post and very depressed caregiver

Bernadetta

I am a full time caregiver to a soon to be 99 year old Mom.  I have had my Mother for 15 years and she was always so sharp.  She had been dealt a bad hand in life she was born blind in one eye, got a macular hole in the other in her 60's learned to live with it and then got macular degeneration so she has very little sight.  She got Covid in March 2020 after she was vaccinated ended up in the hospital for two days went in sharp as a tack came home a different person went straight into dementia.  

I'm 70 have had two cancers now struggling with a chronic rare one with no cure just treatment have to work full time as my one son and his family took everything we had and then ditch us.  The other son lives out of State.  Have no help it is only my husband and I and are nerves are wearing thin.  My mom does not sleep she is up at 4/5/6 in the morning she calls for me all day long, forgets where she puts stuff, can't remember things and each day it gets a little worse.

Medicine for her anxiety makes her more confused.  I was told aracept will not help her now and I am at a total lose.  Assisted living places are 5/6 thousand dollars.  She cries all day long, makes up stories! and bathroom well all the toilet paper goes in the trash can.  Sometimes I wake up with her taking her clothes off.  She throws things away and has no interest in anything now.  I am stressed out of my mind and mostly I cry alone or I get very angry which I know I should not do.  I am always her enemy now and she is always disappointed in me.

What are the stages I see people say stages.  She gets worse as the days go by.  Thank you for any advice.    

ButterflyWings

Bernadetta, I am so sorry you are going through this. You have found the right place to understand, listen, send you virtual hugs and encouragement -- and also share our tips and trial by error with this terrible disease.

More folks will come along with great advice that worked for them, maybe morning though. This is an amazing, caring, very knowledgable group that no one wants to need -- but we are so glad for the sincere welcome, the wisdom, and shared experience.

For me, only getting a neuropsychologist who prescribed first an anti-depressant (Sertraline, my DH takes 50 mg a day, toward evening) and then added an anti-psychotic (Seroquel, or Quetiapine) started at 25-50mg daily, upped to 75-100mg daily within a year and now, 6 most later, he is at 200 mg daily, one in the morning and one around sundowning time. Without Seroquel I would not be able to keep him at home, nor my sanity. The mood swings, nasty attitude, refusal to bathe or change depends without a stress test, constant exit-seeking etc...is a lot. I work too, (from home, have to or we wouldn't eat). So I understand what you are going through.

Have you tried the Alz Helpline/24/7 free call to a trained care consultant. They can be super helpful in times like this when it feels like you are at the end of your rope. You tie a knot and hang on, OK? But good for you, reaching out for help. Keep coming here. It really helps. I wish you all the best.

Here are some of my favorite links - I hope they provide you a little relief: 

Stages -

1. https://tamcummings.com/stages-of-dementia/

2.https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/

And best advice - 

1.Anosognosia is a real thing. This article helped me a lot.  6 Ways to Help Someone Who Doesn’t Know They’re Ill: Anosognosia in Dementia – DailyCaring

2.Memory team said "get your affairs in order immediately". I didn't know where to start. Search "Elder law attorney" on this forum for outstanding (life saving, future saving) advice

3.Read this excellent article and share with interested family and friends:  

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

ButterflyWings

Here is the 24/7 HELPLINE. Ask to speak with a care consultant.

800.272.3900

robinja

That is a lot to handle. I am so sorry you are having to go through all of this. I wonder if your mom would qualify for hospice care. At her advanced age, it might be worth pursuing.

ChicagoGal

I would like to second the hospice recommendation.  People can be on hospice for a long time and they can provide respite to the caregiver every so often.

loveskitties

Has your mother's condition been assessed by a physician or neurologist?

Just because one med did not help, does not mean another will not.

Her anxiety and sleeplessness are serious enough to keep pushing for the meds that help.

CoastFog

Hi there, just want to provide a reality check: you are dealing with a lot! At your stage in life you really should be able to focus on your own health. I can't imagine caring for my mother for that many years. It doesn't seem right that people continue to live well beyond their ability to enjoy life. The advice here is good: contact hospice and try to get your mother on medications that can help manage her moods. Best of luck to you--at least you have your husband.