New here & SO tired!

maxmama

Hello,

I'm new here.  I've been taking care of my mother with dementia for quite a while now.  For a few years it has slowly progressed.  The other day she forgot how to wash her hands.  I work at an office 40 hours a week and I have security cameras all over the house so I can keep an eye on her.  We also have a roommate that lives downstairs that works nights, so he is around for her in the mornings usually, but I can't completely depend on him.  My brother is pretty useless because he lives in Hawaii.  Okay I shouldn't say useless, but he only comes to visit once every two years or so.  Mom is incontinent at night since September 2021, and I have diapers on her during the day now too.  Every single night, several times a night for at least a year, she has asked where her mother is, and doesn't believe me that she passed away around 28 years ago.  Now she asks about her sister too, who died over two years ago.  A couple times she thought I was her sister.  Mom has nothing except her monthly SS, so I hired an agency to help apply for Medicaid so I can hire someone to come in a few times a week and give her a shower, etc.  And I know eventually she will probably have to go to memory care.  So far she has not wandered away, knock on wood.  I admit I saw this site a few months ago, but had not posted yet.  I'm not sure why, but I guess it seemed like a lot of work to figure out what to say.  I'm just so tired that I don't care much about anything anymore.  I do love her, but she's not really my mother anymore and she is driving me up the wall.  She kinda made me nuts before her dementia started just because we are different personalities and she is messy and I used to be neat.  Well, I guess that's enough.  Thanks for listening. 

LicketyGlitz

Even with respite I'm not sure I ever got "untired" during our dementia journey with my mom! Dementia is designed to sap the strength of everyone it affects. It certainly sounds like you are on top of it with getting some additional respite through Medicaid. Have you found any day centers in your area? That might be another way to get a few hours during the day when you don't have to continually check on cameras, or you mom in person.

I developed a strategy when I was losing my mind over the same questions over and over and over again that helped me - I asked questions back. If Mom would ask where my grandpa was (her dad, long since dead), I would come back at her with something like, "I'm not sure, but isn't he the best dad? What do you like the best about him? What do you think he's doing today? Does he like flowers?" Just anything to let her have her topic, but move it to a place where she could have a conversation about things that gave her more pleasure than worrying about the missing person. I don't know if that will work with your mom, but it's worth a shot!

Good luck to you and your mom. Hit up the forums anytime you wanna vent, or have a question. I couldn't have made it through this journey without this venue to learn, lament and laugh with other caregivers 'bout this crazy life.

May flowers

From what you describe, MC may be something to consider sooner rather than later. From what you have described, that it appears she is at risk living alone. It is not a big jump from where she is now to wandering. We didn’t realize this until we moved my FiL in with us - we saw behaviors that were concerning, but we had no idea how bad he was until he was here, especially what he was doing overnight. He required 24/7 supervision.

In my opinion, it is better to move a LO earlier than in the middle of a crisis. 

MN Chickadee

Welcome Maxmama. A couple thoughts - what kind of agency have you hired regarding Medicaid? Generally elder law attorney is best to consult. They can advise the timing to apply and make sure she is getting any benefits she is entitled to. I would get on wait lists at MC facilities now, it can take a while especially for ones that accept Medicaid and sometimes the need to move our LO can come unexpectedly after a change in their condition which is common with dementia. 

Are there any adult day cares in your area? They can be a great stop gap in between living at home and moving to MC. They are usually cheaper than in home care and in some states are covered by Medicaid or waiver programs for lower income folks. Most can accommodate things like incontinence. It can be a good way to get your LO socialization. 

Many PWD start living in the past and thinking dead relatives should be alive. It is best not to correct or try to reason with them, their mind is beyond that. It won't do any good, only upset them. They either get angry and confused or some will keep grieving the loss over and over again like it is brand new information. Many of us send these relatives on trips. Dad is on one of his fishing trips, mother is visiting her sister etc. You will see them soon, I'm here for you, distract with a treat or new activity. Rinse and repeat. Often when they ask about their parents or to go home, they don't have the words to express they are looking for comfort. For a time when things made sense and the world seemed ok. Reading about validation techniques may help you deal with it. Naomi Feil and Teepa Snow are great educators on this. Look up some Teepa Snow youtube videos for ideas. The PDF you can google called "Understanding the Dementia Experience" is a good read for caregivers. 

These phases to pass eventually. It is so hard to watch these changes and keep up with the ever changing care needs. Keep reading and posting here, there is a wealth of information and support. 

Jonesa

I’m new here. My 89 year old mother was just diagnosed with Alzheimer’s and dementia. She also has macular degeneration in both her eyes. She had 3 compound vertebrae fractures in her lower back back in February. Now she thinks she can’t walk or do anything for herself. I moved in to take care of her with my 3 young children. I installed cameras throughout the house so when I have to go to the grocery store I can keep an eye on her. On the cameras I have caught her walking to her bedroom from the living room and from the living room to the kitchen numerous times. I have also caught her sitting up and laying down on the couch by her self  but she constantly asks me to help her get up or lay down.I was just wondering if anyone knows how to juggle taking care of her and 3 kids. I’m lucky if I get 3-4 hours of sleep a night. My moms got her night and days mixed up and I can’t stay awake 24/7. If I try and take a nap during the day when my children are sleeping she calls me and needs my help so therefore I cannot sleep.she also has congestive heart failure on the right side.

toolbeltexpert

Jonesa welcome to the forum that nobody wants to join, you sure sound like your plate is pretty full. I don't have any advice for your DM behavior, you might want to try posting as a new topic, you get a lot more replies from folks who the right experience.

Jonesa

Ty

Juju63

hi, I'm new here .....just needing some support. my mother got diagnosed last year. it's seems to be progressing quickly, but she's still pretty independent in her home. we live on the same property so I'm close by most of the time. I've got my regular work schedule at 3 days a week nursing so I can be around for her and hopefully still have a life. my mother and I have had a rocky relationship though we made great progress  before her diagnosis. I get very resentful though some days. she was abusive when I was small and also refused to believe her husband molested me when I was a young girl. my spirituality keeps me grounded and ok most of the time but there are some days I'm wondering why I'm here doing all this when she abandoned and rejected me so much. it's really wearing on me. and I'm an only child, there is no one else to help me with her care. I'm trying to rise above. I really don't want to put her into a facility, they are horrid the ones I've seen.

thx ...peace and blessings

juju

Juju63

why doesn't anyone want to join?

towhee

Hello Juju63, Welcome to the forum, sorry you have to be here. If you were referring to the chat room, it is my understanding that it is not used that much. If you were referring to your post, there are busy times and slack times on the board, have patience you will get responses. Also more people will see your post if you put it as a separate topic (use the green add topic button at the top of the screen) than if you add it at the bottom of another post.

There are some decent facilities out there, I would keep looking even though it is not your preference, we all need a Plan B. Have you considered adult day care, or having help come into the home?

Wish you well-

NuttyProfessor

maxmama, I can't even begin to imagine how you're coping with all this.   You must be totally exhausted!  To keep your mom at home, you WILL need to get help, and quickly....your health and emotional health are at stake here too, and you can't do your mother any good if you break down. 

 That may mean memory care, but there may be other options that will require a bit of research.  Adult day care is a great idea and may fit within your budget.  Also look into Meals on Wheels, to help with not only your financial burden but the sheer mechanics of feeding yourself and your mom after a long day at work.  Also there are likely to be other ways to get financial support e.g. food stamps for your mom, and property tax reductions since you've got your mom living with you.

I'm all over the camera and remote monitoring solution.  The question is though....is being alone 8 hours a day really best for your mom?   What does she do all day long?  My mom starts getting anxious and repeatedly calling people if she's alone for long periods of time, but she actually needs her alone time for a few hours a day, and she has zero interest in socializing which is why she fought the day care option - and why I know putting her in memory care would be an unqualified disaster.  But everyone's different.  If your mom likes social activities and the companionship available in memory care, then you might look on such a move as a positive for both you and your mom.

sandwichone123

It's the club nobody wants to join because we're all caring for someone with dementia, which we all did not choose and do not want. We would love our loved one to be healthy again, and to have no reason to be here for support.

Juju63

thanks for your input

Daisie

I'm sorta in the same boat you are except my mom is just at the early/mid stage of dementia and is still fairly independent. However, I'm feeling more and more exhausted and resentful, too, and am trying to navigate how to change MY thought patterns and communication to minimize conflict and give myself some peace of mind. A lot of who she is today is who she was before except dementia has exacerbated the negative things a bit more. Okay, a LOT more. Today she told me I was impatient, selfish, weigh more than I think I do (random!LOL), stubborn, immature, and cause my own stress, have to be right all the time, and have to have the final word. I realize she's treating me like she treated my late alcoholic dad. She's using the same tone, arguments, and verbiage with me and it's like having PTSD.

Anyway, think looks like a great place to start seeking support. You don't have to have the perfect words to say - just say what you are feeling and what's on your mind!

I've also found this book to be a HUGE help!

https://www.amazon.com/gp/product/B09WN439CC/ref=ppx_yo_dt_b_d_asin_title_o05aud_?ie=UTF8&psc=1

Thoughtful Dementia Care by Jennifer Ghent-Fuller. I actually got the audible version because then it's like something speaking kindly and compassionate to me rather than me reading it in my own resentful tone!LOL 

JENMURDOCK

hi juju i read you story and reminds me a lot of mine my mom also got diagnosed 1 year ago, she still independent but is progressing. i am her only child i have 3 children on my own , we didn't have the best relationship either and even before her diagnosed she will come to visit us and after 10 days the conflicts will begin she will fight even with her grandchildren. after her diagnosed i was very upset and i was resenting her. all the traumas and all her mistakes came back to me so strong , she is 76 and i am 41 and all i can think is when she was 41 she was living her life not taking care of her mother and she wouldn't stop her life for her mom they had a horrible relationship i know i sound horrible but i hope this is a place we can all be honest. i feel guilt i am angry and also i feel so sad to loose my mom like this. i live in the states i can't afford a good place for  her in miami and living with her will be extremely hard for me and the children , i will feel bad to put her in those  the government facilities for people like her here they are not the best.

right now she lives in her apartment in colombia she is in complete denial and don't let me hire any help.

the facilities there for people with her condition are way better than here i can afford them but still makes me feel so sad to don't bring her to live with me i feel so guilty all the time. 

please forgive my bad english

Tobow

Hi,

My mother was diagnosed in 2021 and we are now seeing a rapid decline.  She is still in her own home but we realize that she needs to be moved in with one of us (3 daughters).  We tried having someone come in to help and she refuses to allow them to do anything to help us out.  My sister that lives closes wants to take her to her home.  We have discussed having her stay with one daughter for a month or two and then moving her to another daughter's home for same amount of time so that the full care is not on just one.  My question is, being new to Alzheimer's, would that be too disruptive for my mom?  The other thought was for the two not caring to take turns giving the sister a break by coming and staying with mom at the sister's house.

Just want to make this as easy as possible for my mom but also knowing this is going to be a lot for my sister as well.

Any advice will be gladly received.

mommyandme (m&m)

Tobow,  my thought on the monthly moves is see how your mom does.  It would be nice for all of you to be involved and give each other respite.  If/when she doesn’t tolerate it then you stop. Have plan B and C ready to go.  She may be more comfortable at one home than another.  As long as that doesn’t create tension for one or more of you, seems like it might be worth a try.