When do you know it's time for MC?

Chris2337

Hi, apologies for the long letter, but I just don't know if I am doing the right thing. A little history. Mom had been living in AL since 2016. Some ES dementia, but still able to teach piano at the university up until November 2019 at 84 years old. She began getting lost driving, missing classes, not bathing, etc. At that point the university decided not to renew her contract for the spring semester. It was like a death blow to take away her passion. She spiraled into a depression so we had her out for Christmas. We noticed a severe drop off in her memory from May. Then her AL facility told her she could not live there anymore because she needed more assistance than they could provide. So after 2 trips to TX-one to drive her car to Las Vegas (no she is not allowed to drive anymore) and the other to pack up her belongings and drive the truck to Las Vegas. Needless to say it was a very frantic time.

February 2019 and so it begins. We lived in a 3 br house with myself, daughter, son-in-law, and 5yr old grandson. Yes there was rearranging. And I even had to sell the house in a pandemic to get a 4 br with a downstairs bedroom for mom. Over the past year, the dementia has progressed so rapidly and quickly we simply were at a loss. We have a Medicare nurse who comes 3 times a week to make sure she gets a shower. She flat our refuses to do if for us. Also, we have a Medicare registered nurse who comes once a week to check on her. Physically for an 85 year old she is doing well. Some kidney deterioration, but no high blood pressure, diabetes, etc. 

As it progressed throughout the year, the incontinence, sleeping patterns, delusions, and falls became more prevalent. I have had to clean up I don’t know how many messes, washing sheets every day, and done things for constipation no child should have to do to their parent. We did find a solution for this with a little duct tape and bed pads. FYI, you can even use the doggie ones at Petsmart. Milk of Magnesia solved the other problem. I am sure I am not telling anyone anything they don’t already know. Appetite is good, but she also wears hearing aids which is another challenge when communicating. Yes, we have a bullhorn to use when she does not have them in. It is 100% affecting our household. I am also working at home, my daughter is doing online school with my grandson, and everything just seems to happen at the worst possible moments.

I was able to get her into the Cleveland Clinic in Las Vegas. We had an MRI on her brain and found out yes she does have dementia. She scored 8 out of 30 in October 2020. In addition, she also has water on the brain called hydrocephalus. The neurologist said she has more fluid on her brain than 99% of the people her own age. Two options, one is do nothing, and the other is to place a shunt inside the brain to drain the fluid. I am not going to put my mom through a brain surgery at her age. And starting late last year we began paying out of pocket for home health care to come 7 days a week for 5 hours a day. The neurologist said there are 3 things-aggression (no), memory loss (yes), and mobility issues (yes) Two out of three.

Mom does not get along with my daughter-too much like her mother (my-ex). There is verbal sparring going on nearly every day and I am the referee. She has been on her own since I was 25, and never remarried. So being set in her ways in an understatement. She treats us poorly, demanding things of us and it is just getting old. I reached my limit after digging poop and giving her an enema out of her butt and cleaning poop off her bed, floor and herself.

The icing on the cake came recently when my daughter found out she is pregnant again and is due in early October. There is no way she needs the stress of dealing with her grandmother being pregnant and I would like a chance to actually spend time with my grandchildren instead of making sure everything is ok with mom. I am an only child, the POA (a must to get that with the will, DNR, etc), and still feel guilty to put her in MC. But sometimes decisions have to be made that we do not want to make and this is one of them. 5 people’s lives and sanity are more important in this case than one. I have a place picked (yes I have done my homework) about 15 minutes away that has proudly had no COVID-19 cases and is affordable. Note she placed her own mother (my grandmother) in a nursing home 1,500 miles away without a second thought. I believe we have done everything we can to take care of mom, but to do so sacrifices our lives as well even with all the help. This is a cruel disease. I do not wish it on anyone and applaud all of you who have taken care of LO. 

Please help me. Am I being selfish? Am I doing the right thing?

BassetHoundAnn

Short answer: you're doing the right thing. No, you're not being selfish. You need to take care of your daughter, son-in-law and grandchild. Those are priorities. And yourself. You should be a priority too. As social workers recently told me: placing your mom in memory care is compassion for you and you're mom. She's going to get worse, placing her now is best because she'll be able to adjust a bit before she gets really, really bad and is unable to adjust, and you need to prioritize the care of yourself and others in the household. No, you did the very best thing. It's such a hard step to make. Kudos to you.

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sjplegacy

NPH, normal pressure hydrocephalus is a cause of dementia. At her age, you have a right to be concerned about the procedure.

There are several reasons a caregiver reaches their limit in providing care, and one is incontinence. If you're concerned about being selfish, don't be. Placing your mom in a care facility IS caring for her. Often caregivers, regardless of the physical and mental cost to themselves, feel obligated to care for their LO. “Obligation is a petri dish for resentment”- Peter Rosenberger. Over time frustration, then anger, then resentment can set in. You are doing the right thing, both for your mom and for your family.

Suzzin

Please look in to NPH--a friend's mother had this, misdiagnosed as "Alzheimer's, nothing you can do" until she finally found an expert. From her experience, this is a cause for dementia that is treatable and just about reversible. They can do a spinal tap and you'll see quickly if there's any improvement. They did the shunt surgery (relatively straightforward) and her mother's dementia and mobility issues reverted almost completely. They had another five years with her back to her "old self" before aging took over again.

Quilting brings calm

When do you know? 

When the LO has the symptoms yours has 

When you have the exhaustion symptoms you have 

When the current living situation isn’t going to work any more 

When the ASLs say she needs more care than they provide 

It’s time. You’ve done the best you can. 

 Let a staff help her 24/7 and you continue to do what you can as her son 

Rockym

Chris, It sounds like you have done everything to keep your mom comfortable.  We all have our limits and it sounds like it's time for you to care for yourself too.  If your mom is in an MC, they can do the "dirty" work and get her on a good schedule.  You will still be the caregiver, but you would now do that with more energy and clearer eyes.

You may find that you can go back to being a loving son with visits, listening to music, etc.  My mom used to love that I would bring my laptop to her community and we would watch Broadway musicals.  You can bet that she may have also scored an 8, but she knew every lyric to West Side Story.  I know it's hard to pull the trigger so to speak, but once you do, your family can move to the next stage.  They always say when the oxygen is getting low on the plane, you get the mask first.  Good luck.

Chris2337

Thank you all for your responses. I am feeling much better about making the right decision not only for mom, but for us as well. And yes I had my daughter read through these to see we are not alone.

Update: We found mom on the floor in the bathroom this morning. She had been there 3-4 hours. Her pants were in the sink with the water running. Somehow she had thrown up on the counter and was just sitting there. As you know picking them up is like lead. So we got the office chair and wheeled her down the hall to her recliner. I had to tell her this cannot continue. If there was any way I could make her brain better I would, but I can't. Was having a mini-nervous breakdown crying and my daughter finally realized this was not going to work.

Update 2: Now that mom was mad at us all she figured she would get us back and poop on the floor. So I spent my 30 minute lunch cleaning up. Meanwhile, my daughter was throwing up from the smell. I asked her are you sure now we are making the right decision?

Anyway, our home health will help with the TB test, COVID-19 vaccine, and the COVID-19 test when it gets closer. We have decided on March 6. Hopefully everything will work out. 

And yes she can bring her keyboard and play for the other residents.

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