Barely Surviving Everday…

drais25

Hi, I am new here. By a grace of God, I was given this website, believe it or not from a woman that was a customer service representative at the Treasury Department.

My mom has Alzheimer’s, and I suspected it four years ago and sent the alarm to the family. Nobody believed me, and thought it was natural aging, and cognitive decline.

I’m the primary caregiver for my mom. I’m reading a lot of the posts that bring me such great comfort, knowing that the experiences I’m having are part of the process even the family stuff.

I find myself so burnt out and full of exhaustion. I’m a shell of who I was. Six months ago, it was quite manageable, navigating my mother. I’m a healthcare provider myself, so many of the things came naturally.

However, some of the wacky behavior, overloaded tasks and defiance to go to doctor are wearing me down. My spouse tells me to just let it go, and also friends encourage me to do self-care. I think to myself, “when?!” I’m literally here from sunrise to sundown, then have another family to tend to! Not too mention a full time job. I’m exhausted on a soul level!!

However, I don’t think they fully understand the scope of what it means to take care of someone with Alzheimer’s. It’s relentless and hard to watch. I’m grieving the mom I used to know, while caring to be present.

*** Deep Breath *** “ Letting Go, Ommmm”

I am barely surviving some days, and I don’t think her family really understands the magnitude of her condition. In the beginning, I was getting unsolicited advice on how to navigate my mother, which I appreciated up until her brother came over and started yelling at her and telling her that she is making this all up. 😔

From that point on, the family has disintegrated taking sides, and I am left alone to help solely with my mom. My brother doesn’t want to help me out in any capacity. Only person helping me is my cousin who helps caregive while I’m at work. Her mom had dementia too ( my mom’s sister).

I don’t want to come off complaining or venting, I’m truly lost how I can sustain this. My spouse doesn’t know the level of exhaustion and I don’t want to wear him down either.

Any advice on navigating this all alone and safe places to share?

Thank you 🙏

tsn122

I shouldn't say I understand because no one can truly understand what anyone is going through… it somehow seems patronizing to say those words. When I lost my child, I remember people coming up to me to tell me they lost their child so they know what I am going though… but they didn't. I'll just say I can relate. The bone-tired exhaustion… the anger… the guilt because you can never really do enough be the good daughter, the good mother, the good employee/business owner… something is not going right when the crisis that is dementia rears its ugly head and roars. A few nights ago, after a pleasant conversation with my mother who lives with me, after welcoming two Airbnb guests to my home, I heard her calling - no, yelling - my name. She called me a bitch who had come into her room, reached over her to her purse and snatched 5,000 out of it. Her money I stole was in a Bank of America envelope and if I didn't come back downstairs and immediately bring her back her money she was going to kill me. I try to explain to her that I've no idea what she is talking about. She threatened to call the police and report me for elder abuse. I finally went to sleep not sure whether to change out of my pjs to meet the police or lock my bedroom door. This is not the 1st time this has happened. She started up again the next morning at 7AM. Calling me repeatedly, threatening to beat me silly, report me for elder abuse. I told her I had to go to a funeral and she said she would make sure it was mine. When I left the house, two police cars, 8 officers arrived. I explained my mom had called them and that she has done this before. Claims everyone steals from her - especially me. She reported elder abuse to the bank. Told them I've stolen from her. Closed our joint banking account. Opened another then pulled all the money out. The County got involved as is legally required. I've been investigated. Had to provide receipts to prove I didn't steal anything but instead spent more on her than she claims I've stolen. But that morning when I left for the funeral after letting the police officers into the house, I stayed away much of the day. I took a hot yoga class. I bought the groceries she had asked me to buy for her, the special dog biscuts only sold at a certain store for her dog, and picked up the Chinese food she always eats. I tried to pick up her medicine but she once again, cancelled her insurance (another endless revolving story). I didn't know when I entered her room if she would throw everything at me and start screaming again but I delivered it, put everything away. And trust me, I am not some wonderful person who is a saint. I just refuse to allow her dementia to control how I feel.

H1235

Welcome. Unfortunately it’s only going to get worse. I don’t think the situation your are describing is sustainable. One of the most important first steps after diagnosis is to see a lawyer. Has your mom appoint DPOA? I would recommend you start looking in to a care facility. I think there is a lot of judgment around this. No one wants to put their loved one in a facility, but a facility offers trained professionals that don’t take things personally, get a full 8 hours of sleep at night and are not stressed daily with worry. A facility also offers activities and a chance to meet and interact with people her age. You would not just be sticking her in a home. There is still a lot of work to do coordinating care, paying bills…. Keep in mind some facilities may have a waiting list. Your mom is not going to want to go and there is probably nothing you can say to convince her. People say I don’t ever want to go to a home, but they can’t really control what life throws at them. Sometimes it has to be done. I think the most difficult thing to deal with with my mom is the anosognosia. She thinks there is nothing wrong, wants to do things she can’t, and blames me for taking all her freedoms away. Don’t worry about complaining here. We all do a bit of that. Dementia is so difficult!

SDianeL

welcome. You are at the right place. So sorry about your Mom. We understand what you are going through. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They will help you help her. You will not be able to care for your Mom without help even with your cousin helping as long as you are working. Most people can’t. Try to get more help. Check into senior day care with your county. Contact your Agency on Aging for resources. Could you hire someone in the evenings to help? Even housekeeping help during the day. Anything to take the load off you. Order groceries and have them delivered, order dinner 2-3 times a week. Sadly many family members and friends don’t understand dementia and there’s not much you can do to change that. 2 things I learned here that helped me: 1) never argue with someone with dementia and 2) you can’t reason with someone whose reasoner is broken. As your Mom progresses she will require more and more care as she becomes incontinent and maybe bedridden. Prepare a plan for when that happens. Many caregivers get very little sleep because of their LO not sleeping and maybe having delusions and hallucinations or wandering. Talk to her doctor about anti anxiety meds to calm her. The best type of doctor to manage those type of meds meds is a Geriatric Psychiatrist. Get a referral to one if you can. Can you do video conferencing with her doctors? I stopped all specialist appointments after my husband’s diagnosis. Come here often for info, support or to vent. Hugs. 💜

pamu

It's extremely frustrating when people (especially family) don't understand or see that the PWD is struggling and think that you are exaggerating. My mom can showtime like no one's business so unless you're in her company for a period of time you'd think she was normal. We've had people speculate that she was "faking it" and she "knows what she's doing". Give her 30 minutes of your undivided attention and the wheels fall off the bus. I find that even doctors can be easily fooled for a time unless they are experienced in dealing with PWD. I found this with her PCP and even her neurologist in the earlier stages which was shocking. Her geriatric psychiatrist is the only one who really understands her behaviors and is managing her medications. My advice would be If you haven't already, be an authorized representative for all of her doctors so you can get and share information and start doing the groundwork for her future care needs. This may be getting a hold of her financial information so you know what she can afford (MC, daycare, home care) or if/how she would qualify for Medicaid or other programs. It's nearly impossible to do this for a long period of time all by yourself while working FT and having a family. My sister and I were juggling our lives and mom's every day - I thought I was going to have a heart attack. I literally contacted every MC/nursing home in our area and requested information and applications. Long story short, Mom had a major wandering episode in Sept and was hospitalized. She was then immediately transferred to MC (she qualified for Medicaid and the hospital social worker was able to get her placed quickly). She went unwillingly but it was necessary. At some point we have to make decisions for the greater good of the whole family. I am now able to be engaged at home and also help with mom (I do her laundry and visit twice a week). It's not perfect but I'm doing better than I was and mom is getting the care she needs.

Anonymousjpl123

Welcome, and I’m sorry you had to find yourself here but glad you did. It is an exhaustion like no other.

You mentioned you are sole caretaker. Do you have power of attorney? Now is the time to get that straightened, as it sounds like your mom could maybe still sign but that may change quickly. I did it at that stage and it was the single most important thing I did. Later, when things got harder, it was an enormous relief to have that.

I know it may sound like one more thing to add to an endless list of impossible to get done tasks, but this is one of the ones to do now (if you haven’t).

Self care? I didn’t do it until my mom and I were more settled. There is lots of good advice here from people who know firsthand what you are going through. You can always come here and vent.

Sirtidus28

I'm 28(M) living with my mother 62(F) and my father 68(M). My father was a heavy drinker in the past, up to a fifth of whiskey a day. He quit 8 months ago but is quickly progressing into what his neurologist considers Alzheimers. He started to have issues a few years ago, things like slight memory loss / being unable to string sentences together, but in the last 5 months he's declined so quickly... His brother was also diagnosed with Alzheimers the same week as he was, so definitely genetic. My mom and are exhausted every single day. We wake up tired and sore and go to sleep tired and sore. Sometimes I see it in his eyes that he knows what's happening and it terrified me. He knows what's going on and you can see the fear if only for a few seconds then its gone. I just joined this community and figured I'd post something. I'm not sure what I need to deal with this, but it helps to say something I guess.

SDianeL

https://alzconnected.org/discussion/comment/260248#Comment_260248

welcome. Sorry about your Dad. You replied to a post and you will get more replies if you create a new post. Use the plus sign at the bottom of the page. Have your dad checked for vitamin deficiency due to drinking. Read the book “The 36 Hour Day” and search online for dementia caregiving videos by Tam Cummings or Teepa Snow. They will help. Come here often for info and support or to vent. We understand what you’re going through. 💜