Need to vent(3)

Brejens2

Hello I am new here. Need to vent about my situation

My Dad was my Moms primary caregiver but he denied she had any type of dementia. He was 87my Mom just turned 88. My Dad ended up in the hospital for 3 weeks and never made it out and passed on Sept 4th 2022. I took care of my Mommy myself while he was in hospital and have been since he has passed. I then realized how much my Dad kept from me on her condition. She was having incontinence. Not showering or brushing her teeth. I was constantly washing sheets blankets and her clothes because she refused to wear depends. I was taking care of her household, my household by going back and forth staying a few days at her house and a few days at mine which is about an hour drive one way. Plus I work full,time from home and take care of my Mom 24/7 by myself. I have asked help from my kids for just a weekend off. By each one taking a day by either watching her at her house or taking her to theirs. They could only give a couple of hours which wouldn't really help me. It turned out to be nothing but a big fight between us of who does more and why they couldn't do more. I have never asked them again. They never call or visit to even see how their grandmother or me is doing. The only help I get is from my son who lives with me when we are staying at my house. I don't get to go out with friends at all because my mom can't be left alone

My highlight of the week is doing errand and my son will watch her for me. My brother lives in California and he never calls either. I am constantly tired, depressed, and feel resentment towards My other kids. My mom finally has been wearing the depends but will only change it once a day so,she leaks so still having to clean sheets, blankets almost every day

It has really been taking a toll on me. It's been 5 months now and i feel like it's been years.  It's very isolating she can't carry on a conversation. She only says a few words and I have to,do everything for her.  I am at my breaking point.

harshedbuzz

BreJens-

Hi and welcome. 

I am sorry for the loss of your dear dad. I am also  your reason to be here, but glad you found this site.

Sadly, your story is a common one. Often a spouse provides more scaffolding for ADLs than they realize. On the other hand, sometimes a spouse will "under-report" behaviors in an attempt to "preserve the dignity" of their LO. My own mom denied dad's incontinence for some reason until one day when I showed up unannounced and found her scrubbing the walls in her hall.

The other piece is that the change in routine and location from your dad's hospitalization and passing likely triggered a decline in abilities over what would normally be expected as the result of this progressive disease.

If your mom can afford it, you should consider bringing in help to give yourself a break. It would be nice if your children had the desire, skills and time to help you more, but it's not the usual order of things-- younger people are busy building their lives. If she can't afford it, look to see if she qualifies for any free or low-cost care. A day program might be a good option for you; there's one near me that even does showers, hair styling and nails as part of their available services. 

You could also consider care in a facility. The care of a PWD is a team effort and you are just one person.

HB

Emily 123

Hello BreJens,

harshedbuzz has some great advice. 

I had a somewhat similar situation in terms of lost scaffolding when my mother's SO needed hospitalization during Covid, and the arrival of support for Mom revealed that she couldn't be alone.   In hindsight, the can had been kicked further down the road by her SO having some signs of dementia as well, and Mom taking a multivitamin for several months instead of her thyroid med. His family took him to live in a facility near them, and cut ties. We moved Mom up to live with me for 9 months until the vax was released, and then I moved her to a dementia focused AL. She was probably mid-late stage 4 when she arrived, maybe early stage 5 when she left.  (https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/6387cebc8122b80fe6f5a600/1669844671210/DBAT.pdf. )

I found it so difficult to have her living with me and try to work.  I don't have children, but the additional housework alone, and the constant vigilance because she didn't see her changes, as well as both our resentments about the change in dynamics we experienced made AL a good choice.  She would not accept a caregiver, her needs weren't as much acute as they were consistent, and I had even more trouble concentrating while trying to work when one was there.  

 It seems like a stretch to keep your mom's home, or to have her live with you while you try to work (been there, done that).  The care model that was viable when your dad was alive will not work now, and you aren't going to be able to replicate it.   My opinion only, and your mileage may vary:  She needs more time than you can provide. That's not your fault.  Your well-being needs to be part of the equation when you make decisions moving forward.  Bouncing her between homes could be disorienting her, and it's exhausting you.   Consider some options to get some relief right now, like an aide, adult daycare, or a even few weeks of respite care at an AL.  Go on Zillow and look at what you might be able to sell her home for, and then look at what care options that money can provide for her--she can't make these decisions anymore, you'll have to. This is not disloyal to your dad, or to your mom.  It is taking a clear-eyed look at what resources are available.  If she had a visible disease that required the level of care she needs now, I'd hazard a guess that you wouldn't feel the need to be the only support that tries to allow her to stay in her home. What would be a reasonable choice if you were not available?

If she hasn't seen a doctor lately, take her to her doc, explaining ahead of time (note or web portal) your concerns. Other physical causes (UTI, etc) should be ruled out first.   Do you have a diagnosis of dementia?  If not, a referal to a specialist might be in order.  Is there a POA or advanced directive for care in place?  You may want to see an eldercare lawyer to help you navigate things there.

One of the things that can help since you're fighting the 'one a day' brief changes is to fit incontinence pads into the incontinence briefs for extra absorbtion.  I did switch away from the Depends as several people here had used this company with good results:

https://www.parentgiving.com/shop/dry-direct-by-parentgiving-1069/c/#drydirect_underwear

Also--think about getting some disposable or washable 'chucks' from Amazon instead of having to wrangle sheets and blankets...

Hang in there.  I know you feel overwhelmed, 

Brejens2

Thank you for the information. My Mom has some money but not enough to pay for regular in home care. I have applied for hospice for her and she was approved so an aid comes once a week to shower her and weekly visits from,a nurse when I am at her house. Unfortunately my home is in a different county so this particular hospice only covers her while I am at her home. They have helped some. I do want to sell her house but just the amount of time and having to,clean it out is just to much of an overwhelming project right now. Especially since it will probably only be me who would have to do it all with no help from my family. I'm trying to,take baby steps to not be so overwhelmed.

Brejens2

THank you so much for the idea putting a pad in the briefs that's a great idea. I know I am going to have to sell her house but her house definitely needs some work done on it and I,recently found out they have a reverse mortgage on,the property. With all the work the house needs I would probably have to do an as is sale. I don't have the money or skills to,do the work. So after the reverse gets paid off and having to sell it lower because of the work it needs not sure how much would even be left over. I just wish this all wasn't just on my shoulders.