Help with juggling children and my mother who has Alzheimer’s, dementia, macular degeneration, and c

Jonesa

I’m new here. My 89 year old mother was just diagnosed with Alzheimer’s and dementia. She also hasmacular 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.

May flowers

Welcome to the board, but sorry for the reasons you are here! You really have your hands full! My FIL was sundowning (had his days/nights mixed up) but for us melatonin really helped. Maybe there is something she can try to help her sleep. 

I don’t know the answer to her asking for help than she needs. My FIL is stage 7, and when we are trying to stand him up, his legs buckle and he says he can’t do it. But he has stood up on his own many times when we aren’t in the room. There’s no reasoning with him so we just have to keep helping.

I always said that I can handle a lot of things about caregiving but I must have a good night’s sleep. One thing that helped is earplugs - I could tune out his piddling around in his room/going to the bathroom, but I could still hear if he called for help. We put an alarm mat in the hall (with the alarm next to my bed) so we could hear if he was trying to go anywhere besides the bedroom or bathroom. 

If that’s not an option, maybe a nighttime caregiver could give you a break. In any case, I hope you get it worked out soon. Hugs.

Jonesa

Ty. I’ve tried a sleep aid and when she was on hospice they gave her 25 mg of Seroquel but she still woke up with both. She can’t get up and get the things she needs so she constantly is calling me for help. It could be 2 am and she is calling me. She doesn’t eat or drink like she should so I don’t know if she will take the melatonin that I have. I can’t use earplugs because of my 3 young children. If I even try and ignore her she will get louder and louder and wake up my kids. The last 4 nights I’ve gotten a total of 16 hours of sleep. I try and talk to her about it and that I need the sleep to be able to take care of her and she always says that she sleeps all night. The last 3 nights she has been wanting to stay on the couch in the living room with the tv on all night. I’m about to have a mental breakdown if I don’t figure out something to help her sleep all night.

May flowers

Seroquel and most other meds had the opposite affect on my FIL - it made him more restless and agitated. At MC they kept adding more on and he got worse. We finally went the opposite direction and with the help of a neurologist, weaned him off everything except Melatonin. It worked (I crush it up and put it in applesauce) and we recently added Risperdone to help calm his morning agitation.  It’s trial and error with meds, different ones work for different people so I wouldn’t give up trying. It took us months to finally get a combo that works. 

I get what you are saying about needing to hear your kids and her waking everyone up. I hope you can get relief soon, that’s not sustainable for any of you!

Nerdyblond

Hi Jonesa...

My mom played us a lot. I kind of feel in some ways they are attention starved and it's triggered when they see their family. This is going to be difficult but try to encourage her to walk by distraction. Like when she asks for help, count to 20, then, "Hey mom! I gotta show you something..." or, "Hey mom, can you help me with this really quick?"

Try that, if that doesn't work, I will come up with a different idea. I'm always testing things. 

Praying for you girl!

harshedbuzz

Jonesa-

It doesn't sound as if you are going to be able to do both dementia caregiving and child rearing adequately without delegating much of the hands-on care to other people. Can your mother hire in an overnight caregiver so you can focus on getting restorative sleep and getting your kids ready for the day before you take over for the day? Could she go to a day program so that you can focus on the kids and a nap between 9-3? 

IMO, your responsibility is to your children. Full stop. You don't get a do-over regarding their childhoods. They deserve better than an exhausted mom who is trying to run a nursing-home-for-one. Is it an option for you to split physical custody of the children with a co-parent to give you a break from the competition of neediness? (many who try to care for young children/grandchildren find their PWD tends to compete with younger kids for attention which can get ugly- one member here had a mom who sprayed a toddler with what she thought was insecticide). 

In your shoes, I would be looking at placement. My mom and aunt both have vision issues from AMD; if they needed placement, I would do it sooner while they have more vision in hopes it would help them adapt more easily. 

You do need a Plan B for implementation as your mom's needs progress which is the reality of this disease.

HB

Jonesa

She always tells me she can’t get up on her own I have a walker for her that she doesn’t want to use. She wants me to sit by her 24 seven and therefore I cannot get anything done around the house or take care of my children. If I don’t sit by her she won’t stop hollering for me every 5 to 10 minutes. I also have medical problems myself. I was recently diagnosed with degenerative disc disease in my lower back and degenerative bone disease in my knees. So it’s hard for me to get everything done that needs to get done in one day because she consumes so much of my time along with my three young children.

Jonesa

I cannot put my mom in a home because she is not financially able to do it or hire any other help. My sister doesn’t have the patience to deal with everything that my mom puts us through. I am the only one in my family that can handle for the most part living with my mom and taking care of her full-time.

harshedbuzz

Given what you have added, you should consider talking to a certified elder law attorney about qualifying her for Medicaid with a plan to transition her to MC or a SNF (depending on your state). 

As for using the walker, this is garden variety dementia-behavior. It's likely she is too progressed to learn or remember to use rather than making it a deliberate choice.

Iris L.

Jonesa wrote:

She always tells me she can’t get up on her own I have a walker for her that she doesn’t want to use. 

She can't figure out how to use it.

She wants me to sit by her 24 seven 

This is shadowing.  She feels defenseless because she can no longer navigate in her own world; she needs you to stick by her like a seeing eye dog.

and therefore I cannot get anything done around the house or take care of my children. 

No, you won't.

If I don’t sit by her she won’t stop hollering for me every 5 to 10 minutes. 

See above.

I also have medical problems myself. I was recently diagnosed with degenerative disc disease in my lower back and degenerative bone disease in my knees. So it’s hard for me to get everything done that needs to get done in one day because she consumes so much of my time along with my three young children.

This is caregiving for a PWD.  By it's very nature it's time-consuming.  Once to accept this, you will make the right decisions.  Remember, let care needs drive your decisions.

Iris

Jonesa

She also wants me to rub her legs and feet numerous times day and night.

Stuck in the middle

Jonesa, you are asking us how to do two very difficult jobs at once.  I don't know anyone who could sustain what you are attempting.

There was a PBS special on Alzheimer's a while back, I think on Nova.  One of the caretakers thought her four year old son "could wait" while she cared for her mother.  Twelve years later, Mom died and Son was 16 and being expelled from Catholic school for poor grades.

I don't see how you can care for three children and your mother without substantial help.  The fact that you sleep so little is alone not sustainable, plus the shadowing means you are being forced to neglect your children.  

In your shoes, I would be on the phone to my elder care attorney to get her placed via Medicaid.  Your local Alzheimer's Association chapter can refer you to an attorney in your area.  If not, the Bar Association can.  Barring that, I would move out with my children and report Mom to Family Services as an incapable adult in need of assistance.

As Clint Eastwood said in the movie, "A man has to know his limitations."

mommyandme (m&m)

First I must say I’m so incredibly sorry for your situation.  I agree completely with the wise replies you’ve already received! You will have to make a major change in you and your children’s living arrangements.  Your mom may actually become hostile towards your children.  I hope you never leave them home alone with her.  The memories being made by your children of both you and your mom may have negative consequences for their lifetimes.  How old are they? You must get help with your mom now. Please call the Alz.org help line to see what a good first step might be. I think the Medicaid/elder law attorney should be high up there. 

I’m so sorry. 

Dmc0330

My mom has been struggling with dementia for the last two years, I lived with her and my two boys. My boys were old enough to keep an eye on her while I was at work (22 and 14 at the time) but it was a struggle as they didn't really understand what was going on (it was hard for them). a year ago I had to place her in assisted living as she was becoming combative when she wanted to walk out of the house and just keep going not knowing where she would end up. She has been there for a year now and although I don't have the daily care giving to do I've been busy selling the house and finding a new home for us (we didn't have her things in order ahead of time so I had to use the money from the house to pay for assisted living). Needless to say, I visit her frequently and I'm left with the emotional aftermath of all that we have been through and continue to go through. The thing about it is, my mother has always been there for me and I wanted to do what was best for her. I can't imagine navigating through all of this with younger children. I wish you well and encourage you to take care of yourself.