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how to manage mother with young-onset Alz and two very small children
kbl54
Posted: Monday, November 18, 2019 12:42 PM
Joined: 4/30/2019
Posts: 3


Hello,

I'm not new to the group, but I am new to posting. I am looking for anyone who has experienced a semi-similar situation and can provide support or advice as I continue this journey.

I am the 24/7 caregiver for my mother who has moderate stage early-onset Alz. She was diagnosed in moderate stage at 53 years old and is now 56. My husband and I are in our early 30's. We moved from OH to PA to live with her and it was a semi-easy transition thankfully. In other words, she didn't object to us moving in and seemed to enjoy the company. We now have a 2 year old son and are expecting another child next summer.

For the past 3 years she has declined, but we have rolled with it and I have been able to get out of the house with her-- food shopping, doctors appointments, playground with my son, going out to eat. However, over the past 6+ months she has become agitated/angry often, refuses to shower, won't get in the car and when she does she will get angry halfway to our destination, start screaming to let her out and will try to jump from the car. I now have the door set that it will not open when she tries to get out, but it still creates a very scary situation for me because I am trying to keep her AND my son safe.

Due to her almost constant agitation, we now leave the house less often. This means that my son and I are pretty much trapped in the house as she screams at me that I'm stealing, lying, etc. She will be quiet and rest for parts of the day, but she has these fits about 2-4 times a day.

Now that I have another child on the way, I am just wondering how I will handle it all and I also worry about the impact it is having on my son. He will go to pre-school next year but that adds another layer of stress for me to figure out how I will get him to preschool if she won't leave the house (husband works early in AM and gets home late).

I am committed to keeping her home with us so I am just wondering how people do it and what I can expect with her behaviors moving forward. We pay a companion caregiver to come in twice a week, but my mom flies into a fit of rage now when she sees the woman. I've looked into an adult daycare but considering she won't leave the house or get dressed I don't even know how I would get her there. It also puts my stomach in knots to think of her sitting in a room with all older people- she was a well-respected doctor in our small town and it is so hard to see her in the state that she is in, and to have other people see her this way.

Thanks for listening. I hope that someone else can relate and share their experiences.

 


CodyW
Posted: Monday, November 18, 2019 1:10 PM
Joined: 4/5/2013
Posts: 853


I am sorry your Mom’s behaviors have become so challenging.  I do not have any suggestions for managing her at home while caring for a 2 year old and a baby on the way.  However, I can share that some of my mother’s delusions and aggressive behaviors were taken down a notch with medications.  It took a few tries to find the right drugs for her and I had to accept all the black box warnings.  The drugs brought her some peace and protected those around her from violence.
terei
Posted: Monday, November 18, 2019 1:15 PM
Joined: 5/16/2017
Posts: 467


I am sorry to say this, but I think you need a wakeup call.  Not only is your mother putting you and your family through trauma, she is not having a ball either(constant agitation, refusal to bathe, screaming, dangerous actions)

Did you ever think that she might do very well(or at least AS well) at a facility where she can have daily activities + attention + allow your family to have a normal, peaceful life.

Trying to care for an AD patient at home is a monumental task.  With two small children in the mix? Untenable.

If your mom was compliant + seemed quite content, it might make sense to keep her with you.  That is not the case here. To be honest, I would not trust an unpredictable AD patient around an infant or a toddler.

In your position, I would be looking for a facility that had good programs for her + also had a visiting doctor + medical team so she would not have to leave the facility for medical appointments.  


MN Chickadee
Posted: Monday, November 18, 2019 1:51 PM
Joined: 9/7/2014
Posts: 901


 

 Here are my two cents from one mother to another. My mom has early onset, and is in late stages of Alzhiemers now, but she started showing significant symptoms when my youngest child was a baby. I now have two small children and she lives in a memory care facility. We moved her last year after keeping her in her home of 40 years until we couldn't anymore.  

 

   

 

 Outbursts and suspicion and anger: You might do some research on communication techniques for dementia. Therapeutic fibbing, finding workarounds, not trying to argue points or reason with her are key. However, sometimes our loved ones have behaviors that go beyond what can be managed through technique. A visit with a geriatric psychiatrist may be helpful. They are the best equipped to treat behaviors and symptoms associated with dementia. A low dose medication may help her not be so angry and suspicious. However, I personally would not count on any PWD being agreeable enough or remaining physically able to do daily drop off and  pick up with you for preschool. Even if she can right now, there is no assurance that will be the case in a few months.  You would need to hire someone to stay with her.  

 

  

 

 To bring in a companion, try to spin it differently. Don’t say it’s for her. Perhaps it’s a friend of yours who is down on hard times and you are paying her a little money to help out around the house, or help with the kids. Or it’s a cleaning lady. Tell the person to play along, and as she and mom get to know each other the roles and relationship can expand.  

 

 

 

   

 

 In terms of symptoms that are likely coming and what to expect: Soon it will not be just memory and emotions that are affected. Very physical things are looming. Incontinence is pretty much inevitable, meaning soon you will need to help her in the bathroom as well as changing soiled Depends and assist in bathing, dressing, and grooming. My mother would smear feces everywhere if left unattended in the bathroom, and the cleaning was exhausting. Some folks wander away from home, though my mom never did. Night waking is also extremely common. They aren’t oriented in the normal clock and may wake up in the middle of the night thinking it’s morning, or be all out of sorts. She will likely start to lose interest in former hobbies and lose abilities to do things she used to in order to keep busy. From the middle stages through end, my mother lost the ability to read or follow television. She would tear apart drawers and closets when bored having no idea what she was doing or looking for leaving a mess everywhere she went. Despite being an elementary school teacher and loving kids before this disease, she became aggressive and ornery towards children and I could not leave them alone together for even a minute. She was always picking on my toddler and it wasn't fair to the kiddo to be put in that situation. Given what you have shared I would not trust her with your baby or toddler if I were you.  Eventually it affects mobility, ability to eat solid food. People become wheelchair bound and need to be spoon fed purees and liquids  until even swallowing is forgotten and the end is near. This process and journey is different for everyone. Some people go through all these phases in the course or a few years, others live a decade. It's hard to know what the future holds. 

 

 

 

 Though you probably don’t want to hear this, I feel the need to warn you. You are getting in way over your head. Knowing what I do now about dementia, I would never in a million years try to take care of a PWD and a newborn and toddler. NFW. At the very least, I would have hired help lined up. But even with that it sounds like a disaster waiting to happen.  Caring for a PWD is a full time job. All consuming and constant and each day can be crazier than the last. A newborn is a fulltime job. Your kids deserve to come first, to have a peaceful home, a mom that can give them her best. I would give some thought to how your mother’s presence will impact that. It’s admirable that you intend to keep  her at home, but I really urge you to have a plan B and plan C. Things can change suddenly and drastically with dementia, and having to act during a crisis is so much harder and sometimes impossible. I would do research on memory care facilities and be on wait lists. What if she takes a significant downturn and you can’t balance it with a newborn? What if you have complications with your pregnancy and literally cannot do the work of taking care of her? Who will be there to do it? What if god forbid your baby has a health issue and you are staying at the NICU for a month? Who will care for mom? What's going to happen when they are both waking you up and your exhaustion starts to affect your own health and ability to care for any of them? This plan just does not sound feasible.  

 

 

 

  I hope some of this has been helpful; I hope that my honesty lands ok. Stay in touch.  

 

 

 


Rescue mom
Posted: Monday, November 18, 2019 2:20 PM
Joined: 10/12/2018
Posts: 1157


Terri and Minn chickadee offered good advice, even though it may not be what you wanted to hear. A person with notable AD—even one who is docile—has no concept of things that must be done to keep toddlers and infants safe. 

You will not be able to turn your back for a moment; while you are busy with one child, you mother can be doing almost anything—or not doing, such as not putting dangerous things away, or not closing doors. What effect is her screaming having on your kids? Who will get your attention when she does get a door open and runs—her or the kids? What will you do when she’s incontinent, and the kids are “helping” her “play” with her own wastes (which happens a lot)? What about when you get sick, as most young parents do when kids start daycare or preschool?

You are about to have 2 very young children who need and deserve a mom. Your mom also deserves care and safety, which—along with medical help and meds if needed—can be provided 24/7 by skilled staff at a facility. They know how to get her to bathe and participate.

 Many here have talked about how their LO objected at first, but quickly learned to accept and enjoy it. And sometimes, a person with AD is not happy anywhere. Sometimes there are no good answers, just some that are less bad than others.

Safe and protected 24/7, well fed, clean, properly medicated, plenty of social activites, are what a facility does, and quite often the PWD does come to like it.


Unforgiven
Posted: Monday, November 18, 2019 2:22 PM
Joined: 1/28/2013
Posts: 2616


I'm so sorry, but as someone who experiences CPTSD and anxiety disorder because of childhood trauma, you may want to rethink your situation.  I know you love your mother, and I know her behaviors are not her fault, but as a mother of young children, your first responsibility is to them.  Screaming snger and meltdowns will affect them, no matter how hsrd you try.

Not all people with dementia will exhibit this behavior, but some will, and as much as I respect Teepa Snow, her communications techniques work in extreme instances.  Sometimes drugs don't work either.

Caregiving puts a caregiver under an ungodly amount of stress.  It is noble and loving of you to endure it yourself, but please think of your children first.

The other big issue you're up against is that the natural behavior of small children stresses out people with dementia.  So it's bad idea from both directions.

I'm so sorry you find yourself in this situation at your stage of life.  So very unfsir.


Eric L
Posted: Monday, November 18, 2019 2:46 PM
Joined: 12/5/2014
Posts: 1197


Our kids were 6, 4, and 2 when my MIL was diagnosed. She passed away at the end of September this year. They are now 11, 9, and 6. It was a long journey and the kids dealt with quite a bit. Mommy (my wife) missed swim meets, scout meetings, and a host of other events because she had to stay home with grandma. I missed awards ceremonies at school because I was home with her (thank goodness that my parents are retired and their presence means more than mine). Do you or your husband feel comfortable missing your children's events because one of you has to stay home with Mom?

I don't regret keeping MIL at home. But, truth be told, we did it more for us than her. Our home was also able to accommodate our family and her. This might be a humble brag, but my in-laws bought a 3900 square foot home on a 1/2 acre of land with 3(!) master bedrooms. We were able to move into a downstairs bedroom across the hall from MIL when it became apparent that she was no longer able to be alone downstairs anymore. The bedroom we are currently in used to be our kids' playroom. Our old bedroom is now the playroom.

We were very, very fortunate to have the space that we did (and do) have. When we moved downstairs, it was actually a good thing. MIL had some incredibly difficult behaviors and giving the kids a space away from her was good. When she was ranting and raving, we could send them upstairs.

All that said, unless you have the kind of living conditions that we do and the support we had, don't commit to keeping Mom at home.
King Boo
Posted: Monday, November 18, 2019 2:49 PM
Joined: 1/9/2012
Posts: 3091


A few thoughts.

Saying you are committed to keeping her in your home is an admirable goal.  However - it's also very naive, unless you sit down with your husband and set some parameters.

Care needs must drive the decision making.  Right now, unless her care needs can become easier, you are at a threshold, because an angry, delusional dementia patient is NOT what a child needs to be around, and it is not what you as a parent need to be dealing with.  Because there will be nothing left of you to parent.

So - get her to a Geriatric Psychiatrist MD, familiar with dementia, who can evaluate for medication to make her angry delusions lessen.  If she is more manageable, she may be able to be taken care of more easily, whether it be home or elsewhere.  Then, you try adult day care for a time period.  It takes a while for any change to become 'usual' for the PWD.  At least, until the next inevitable decline.  Also evaluate in home care helpers, and area facilities at least for respite.  It also helps to have a nursing home in mind for an after hospital rehab stay, it happens eventually.

Memory Care units have many different people there.  In my Dad's, there were many former physicians, lawyers, etc   The disease does not respect social status or educational level.

Exit seeking, incontinence, agitated angry behavior, and night wakenings are all pivotal levels of care needs that are triggers for placement.

I placed my LO mid stage because I was parenting young children.  There simply was not enough of me to go around. Even with placement, elder care wore on me.  But it helped to have the immediate responsibility of 24/7 care on others.  And I could make sure it was kids first.  Their future development and well being depended on my parenting.  

I had a moral responsibility to make sure my parent was cared for, but it was for a decline.  I did - but could not do all the care myself.


dayn2nite2
Posted: Monday, November 18, 2019 5:05 PM
Joined: 6/20/2016
Posts: 2028


You cannot keep your mother home without damaging your children's sense of well-being ultimately.

Please place her ASAP.  You will probably have to have her see a geriatric psychiatrist or even get her admitted to a geri-psych unit in order to stabilize her for placement.  She is too disruptive and you have kids that are depending on you to nurture and care for them.
kbl54
Posted: Monday, November 18, 2019 6:58 PM
Joined: 4/30/2019
Posts: 3


Thank you all for taking the time to read and respond to my post. It means a lot to me.

Despite my mom being agitated more often, my son is the light of her life. He is what makes her happy and they share a very special bond. Thankfully we have a large house with a lot of property so we do get outside when it's warm enough and she teaches him what she can about nature and her horses (we have 2 horses and a donkey)

I know he is only two, but I talk to him often about his grandma and explain to him that she doesn't feel well at times and can't help it. When she starts yelling he will say "sick sick" so I do feel he understands-- but as many of you noted, it is not an ideal environment for a child. However, he does see his mother and his father showing great compassion for his grandmother and he models this behaviors. He holds her hand and will bring her her shoes. He asks her to sit down and watch a cartoon with him in the morning. I don't like him around yelling, but I do feel like he is learning from a unlucky circumstance for his grandma. He is a very happy child and I don't perceive that he is experiencing trauma from the situation right now-- obviously that may change in the future and he and my future child will have to come first.

That being said, for anyone that may comment on this post in the future, I am really looking for ways to keep my mom at home. People do keep their loved ones home through this illness and I just want to know how they did it. Daily hired help? Were certain medications more helpful than others at calming episodes (she is on aricept, namenda, zoloft, & we just started seroquel again)? How did you get them to an adult day care if they are not willing to get in a car on certain days?

Thank you!


PaniniSandwich
Posted: Monday, November 18, 2019 8:03 PM
Joined: 7/1/2017
Posts: 115


I will add my two cents as I am trying to do the same thing.  We moved my mother into our home when my oldest had just started her senior year and my youngest was in 8th grade so a much different situation than you are in.
Fast forward 4 years and I have hired a caregiver to come in, every weekday, for 5 hours.  At first I felt so guilty and almost fired her but then I realized it gave me a chance to breathe.  
Adult day care didn't work for us either BUT I will tell you, having a caregiver come every day is a God send.  Tell your mother that she is there to clean your house, or she is a friend of yours.  That's what I did, I told my mother that my friend was going to sit with her for a little while because I had to pick my child up from school and I worry, "it's not you mom, it's me".  A year later she doesn't even think about it anymore.  I tell her she's coming and I will be back.  
If you want to keep her home you have to have help, there is no way around it, ESPECIALLY with young children.  Does your mother have a separate living space or is she in the main area of your house with you?  
I have a friend who has 4 children under 13 and did have her mother at Adult Day Care a few days and caregivers the other days .  They would send the van for her, pick her up and she would have the caregiver pick her up at the end of the day.

You are going to need a caregiver especially with your children in school because you will want to be room mom, or go in for special times, etc. 

I don't know what part of Pennsylvania you are in but I would suggest you contact a Geriatric Care Manager and have them come to your house and go over your options.  They are very knowledgeable about how to set up your home and the care that is available in your area.

 https://www.aginglifecare.org/ALCA/About_Aging_Life_Care/Find_an_Aging_Life_Care_Expert/ALCA/About_Aging_Life_Care/Search/Find_an_Expert.aspx?hkey=78a6cb03-e912-4993-9b68-df1573e9d8af


abc123
Posted: Monday, November 18, 2019 8:41 PM
Joined: 6/12/2016
Posts: 673


Dear Kbl54,

You certainly have your hands full. I’m sorry that your Mom has this terrible disease. She is three years younger than me. From what I have read on these boards, it seems that some people with early-onset seem to progress much quicker than people with later onset. Hopefully others will comment on that. 

I can’t see how you can possibly continue to care for your Mother and your family without a full time caregiver to assist you. I recommend someone for daytime AND nighttime. I think a geriatric psychiatrist would be a blessing for your Mom. The right meds could make a world of difference in her quality of life.

In reference to getting her to a daycare program, check around to see if there are companies who specialize in transporting PWD in your area.

Things will continue to progress, this will become much more difficult. Good luck. I wish you the best. 


harshedbuzz
Posted: Tuesday, November 19, 2019 4:28 AM
Joined: 3/6/2017
Posts: 1845


kbl54 wrote: That being said, for anyone that may comment on this post in the future, I am really looking for ways to keep my mom at home. People do keep their loved ones home through this illness and I just want to know how they did it. 

It is doable. A lot depends on the finances of the PWD and whether they have assets to provide in-home caregivers for respite. A lot depends on the temperament of the PWD and the family of caregivers. A dear friend cared for her mom with dementia at home; it worked because her mom was relatively docile and because my friend's children where college and grad school aged when mom was diagnosed. She hired a HHA to provide care while she worked a part time job at first and then took FMLA while mom was in hospice. Family vacations weren't possible the last 4 years; even visiting the WDW timeshare was too disruptive for mom. Her husband was given a big promotion and moved cross country spending one week a month and the odd weekend he wasn't traveling at home. It was lonely for her and frustrating for her sons and husband who were missing her in their lives.


Another thing you'll need to look at, are modifications to her home. This disease will eventually have real physical manifestations. Unless something else kills her first, incontinence is in the future and will require management and clean up. I zero entry shower big enough for two would be a sensible thing to investigate. Google "wet rooms" for ideas. If she goes through all stages of dementia, she will eventually need a wheelchair and will likely become bedbound. You'll need space in the house that is wheelchair accessible. 

If you haven't already gotten the documents to act on mom's behalf, you will want to sit down with a CELA to make sure you can act on mom's behalf. Have you looked into her finances to make sure she is living within her means and that she's meeting her obligations around taxes, insurance, etc.


Daily hired help? 

You aren't going to be able to do this without daily help. If you think of parenting your child(ren) as your job, you need caregivers that will allow for that. Perhaps your schedule should include someone to come to your home to get mom ready for the day while you take your son to preschool and then get some time to yourself until the new baby comes. 

I also think you need to tour facilities local to you in order to create a Plan B- who will have mom's care when you deliver your second child? What if you do need bedrest for some reason or a baby who comes early and needs to spend some time in the NICU?

You may need to create a "fiblet" to make mom accept a caregiver in the house. The family dynamic can be challenging when you bring people onto her turf as opposed to moving her in with you. You might have to introduce this person as a cleaner or nanny to get her past the gates. I would start this asap and plan on bringing in a small roster of helpers that may allow you to attend school functions or have a date night. My friend who had her mom at home, had 4 regular caregivers in the mix plus a retired nurse friend who would coordinate care when my friend went to her son's graduations and moved into grad school. I'm near Philadelphia, this care through an agency is just about $30/hr. 

Were certain medications more helpful than others at calming episodes (she is on aricept, namenda, zoloft, & we just started seroquel again)? 

My dad saw two excellent geriatric psychiatrists locally. He already had some underlying mental health issues that had never been addressed, so we felt comfortable with Seroquel (25 mg b.i.d. as well as Prozac and a Wellbutrin "kicker" to try to address the apathy. Meds are so very individual- the bigger piece is finding a specialist who is a wizard in this area.

How did you get them to an adult day care if they are not willing to get in a car on certain days? 

We never did. You might not either. Part of the reason we eventually placed dad was because he was very resistant to care in the home and getting him out to a program was not in the cards. I have a cousin who got her mom to attend by attending with her at first and then gradually ghosting while mom was distracted. Her mom grumbled about it a lot, but they managed to make it work for almost a year before mom's behaviors escalated to a place where she was asked to leave.

I would urge you to re-read what Eric L wrote. He is unique among us in that he has actually done this in circumstances similar to what you face. You might want to check out posts by Crushed on the Spouse's Board. His DW was a brilliant physician who developed EOAD at about the age your mom is. He was able to care for her at home until she needed a higher level of care than he could manage. 

 

Thank you!



RanchersWife
Posted: Tuesday, November 19, 2019 7:21 AM
Joined: 3/14/2018
Posts: 189


Kbl54,

I have 5 boys, 4 at home, ages 20, 17,14,11.amd 6.  We are caring for my mil.  She's solid stage 5 and slipping noticeably lately.  She has A tiny home on our property...100 feet from my front door. We have a cattle ranch.  She has been with us for 18 months now.  She wants to be home with us.  She adores each of my boys and they provide wonderful thoughts and memories for her to muse on each day.  Also, we've already broken even on the expense of a really nice tiny home when compared to AL...

Eric says it is important to have separation room.  We have that.  We have flexible schedules.  We also have older boys who can give meds and make meals.  I see a hired person in our future.  We limit after school activities but it's easy to say year to too many things anyway. 

The way you handle the stress of caregiving matters a lot.  Keep your mental health good.  That's important.  


King Boo
Posted: Tuesday, November 19, 2019 7:22 AM
Joined: 1/9/2012
Posts: 3091


.

Finding a GREAT Geriatric Psychiatrist MD would be the first thing on my list.  Optimizes quality of life for your Mom, and optimizes success for caregiving because she will be easier to work with.  A mild anti-anxiety medication could greatly enhance her days.  It stopped my LO from getting tossed due to difficult behaviors and life became enjoyable for him and his caregivers.

Network the local nursing school for possible 'friends' that can come and be with Mom first while you are there, then you can leave her with them

Going to activities like Adult Day with your Mom and staying for a craft can help foster a routine and therefore acceptance.

Find an emergency source of respite care (usually a local facility) that you have visited and liked.  Family vacations will be long in the past without one soon.  This disease can last 5-20 years.  Plan accordingly.

Visit a CELA   www.nelf.org for proactive steps you can take now to make sure you have the money to care for your Mom for the duration of the disease.

Lock down her credit with all 3 reporting agencies after you check the reports.

Sit with your spouse and talk NOW about what a line in the sand could be.  When your health and well being is at risk?  The children?   etc, etc.  You cannot see the forest for the trees in a crisis - very healthy for a discussion to take place now.  HOpefully it will never come to that but...... a good thing.


Eric L
Posted: Tuesday, November 19, 2019 11:23 AM
Joined: 12/5/2014
Posts: 1197


I figured I would expand my story a little bit. We moved in with our in-laws about 7 years ago (actually, I guess it is closer to 8 now). I'll spare you the details, but it was going to be a temporary stay. We were looking to save for a house in our current neighborhood. One of the "conditions" of our move was that MIL would retire and be a "fulltime" grandma. She had psoriatic arthritis and it seemed like it was affecting her work (pain, mobility, etc). It was a perfect way to get her to retire. We had no idea at the time that the issues she was having with work were because she was in the very early stages of dementia.

A couple of weeks after we moved in, we found out that #3 was on the way. It was at that point that we said "well, let's get through the newborn stage with her and then we'll start working on a move". Our 1 year stay became more like a 2 year stay at that point. A few months after we found out that my wife was pregnant, we also found out that FIL had pancreatic cancer. The prognosis for most folks with pancreatic cancer is awful. After diagnosis, my wife and I decided that finding our own home just wasn't going to happen. As I mentioned in my previous post, we are very fortunate that my in-laws bought a gigantic home that was able to accommodate them and us.

As soon as we moved in (summer of 2012), we noticed that something just didn't seem right with MILs memory. We were a bit concerned because MILs dad had dementia and many of her aunts and uncles did, too. With father in laws issues, her stuff kind of got put on the back burner (though we did monitor it).

From 2012 through about the fall of 2014, she did okay. Looking back, she had some issues (like our oldest was late to kindergarten a couple of times - MIL was a teacher, tardies were not part of her MO), but we did okay. She was doing her fulltime grandma thing. Because of FILs cancer, he had to retire so he was also home. He kept her on schedule (she was already starting to lose track of time) and taking care of the kids and him probably kept her more engaged and active than ever.

In the summer of 2014, we took a road trip with her to her hometown. We really started to notice things were getting worse, memory wise. Shortly after we got home from the trip, she told my wife "I have no money in my checking account and I can't figure out why" so my wife started digging through things and found that she was 6 months ahead on her mortgage because MIL was forgetting that she paid it and would pay it again. At that point, my wife (and then subsequently, her brother) took over the finances. A few weeks later, we got home from the soccer fields to find a panicked message on our answering machine. She was supposed to meet friends for lunch and a movie, but never showed up. She wasn't at home, either. It freaked us out (especially my wife). My wife to go find her. After about an hour and a half, my wife finally found her. She was just driving aimlessly around the mall where she was supposed to meet her friends. A few weeks later, she got lost driving again. Thankfully, she called home and we were able to get her back home.

It was at that point in time that we decided that it was time to write a letter to her doctor to explain everything that we had observed and she was diagnosed with early onset. We had to make her stop driving, and her days a "fultime grandma" were over. Luckily, I had decided to take a break from teaching (I really hated my job), so I was a stay at home dad while all of this was happening.

Aside from her diagnosis, 2014 also marks a turning point in our family lives. Our oldest was 6. He was in first grade and started participating in more activities. He played sports and we signed him up for Cub Scouts. Our middle kid was 4 and in preschool and he also was playing sports. The baby (she's now 6 and we still call her the baby sometimes) wasn't able to do much yet. I only mention this because it is really just a preview of what was to come. As our kids got older, they became involved in more and more things. I only mention this to you as it is something to keep in mind for your growing family.

Just because this post is already long, from 2014 - 16 (aside from FIL passing in 2015) things were pretty much status quo. MIL was clearly progressing through her disease, but we could still leave her safely at home. I could get the kids from school and she was fine being alone for that time. We could go to the kids soccer games on Saturday and she didn't have any issues. We couldn't leave her alone for super long stretches, but she was still able to take care of herself.

2017 was really when things started to go downhill. The two older kiddoes were in school all day by that time. The youngest was in preschool. By the spring of that year, it had become apparent that we couldn't leave her at home by herself for stretches of time. She was also having anxiety and agitation issues. Really, by the fall of 2017 we never left her by herself. We had hired help a few days a week. When we didn't have help, she went with me to drop the kids off at school and pick them up. She went to soccer games and scout meetings and dance classes when my BIL was home to help. We dragged her everywhere, even if she didn't want to go.

2017 through most of 2018 were most of the same. Dragging her with us to kids activities, etc. She had a huge, huge, huge downturn around this time last year. She became mostly immobile and needed more hands on care. By the beginning of this year, we had help in the home 7 days a week. We couldn't drag her places anymore. She couldn't go to school with me to drop off the kids or pick them up. Things just became more difficult. Between my wife, my BIL and myself (and hired care), we were essentially taking shifts being at home with her. It was at about this point in time that we started missing things with the kids. I missed awards assemblies at school (care started later than the assemblies). My wife missed swim meets. I could go on and on, but now that she is gone, it's insane how much easier our lives have become (and our kids are super busy.

I know this post is super long and I haven't touched on points like the geriatric psychiatrist (essential for keeping MIL at home). I didn't even mention that MILs sister came up every Saturday to hang out with her sister (it was a huge help). It took my wife, her brother, myself, my wife's Aunt, hired help, and a super cool house that accommodated "safe places" for us to keep her at home. Not to mention my parents taking them to swim meets, attending awards ceremonies, and practices when our schedule was just too tight to make it work.

You don't have to read through this whole post, but just know that keeping a parent with dementia at home is hard. My wife and I did our best job to give our kids a "normal" life. But if you don't have the support (just go back to my last paragraph.. 3 fulltime helpers, hired help 7 days a week, and a very supportive sister), it won't work.
abc123
Posted: Tuesday, November 19, 2019 12:22 PM
Joined: 6/12/2016
Posts: 673


Dear Eric, 

Thank you for sharing this valuable information and your life with us. If you think of anything else, please post it. I sincerely thank you. I have learned so much from you and the others who have replied to this post. You are all a huge blessing.


gubblebumm
Posted: Tuesday, November 19, 2019 3:57 PM
Joined: 7/12/2017
Posts: 1334


Your child(ren) are taking second place to your mother.  They they shouldn't.  Yes people keep their parents in the home, and the stress can often damage marriages, cause stress for everyone, little kids do get scared and stressed, and it will only get much much much harder.

Your commitment should be your children and marriage first. But if that isn't what you want to hear, I have no advice but to be prepared for missing play dates, school functions, parties, etc caring for your mother.

If you only want to hear that meds will fix it all and it'll be okay, sorry to disapppoint

Please read up on kids and stress and the long term physical affects it has on them, even this young.  Would your mother want her grandkids hurting, or your marriage suffering?

The reality is it just gets worse, not better no matter how much you want it to be different

 


Unforgiven
Posted: Tuesday, November 19, 2019 5:46 PM
Joined: 1/28/2013
Posts: 2616


Ways to keep your mom at home.  People to manage it, but rarely is a family in a situation with children so very young.  I kept my mother at home outvof a sense of duty and the belief that she had a better quality of life without becoming destitute if I provided the caretsking, but I was retirement age myself.  The grandchildren had limited access, and my mother, while difficult, didn't have the emotional meltdowns and anger issues you report.

So, you will need drugs to calm her anger and anxiety.  And you will need a full time caregiver for her.  This is because infants need a full time caregiver too, and you can't be in two places at once.  Younger onset does progress more rapidly and have more of the more problematic behaviors with angry meltdowns.  You might conceivably find yourself choosing which diaper to change first or which one to sooth after a bad dream at night.  You will need more help than just your husband.  The only thing that got me through to the end was the help that hospice nurses provided.  Changing my mother was a two man job, and I was a physical and emotional basket case by the end.

I hope that comes off as non-judgemental.  I hope your mother has the finances to allow for this.


dayn2nite2
Posted: Tuesday, November 19, 2019 6:00 PM
Joined: 6/20/2016
Posts: 2028


Rarely on a public forum can you dictate the answers you wish to get.  What you DO get is the truth, though.

You want to keep your mother at home.  Understood.

You must get a Plan B together (facility) because it wouldn't be out of the ordinary for your mother to decide she doesn't like the children because they take your attention away OR becomes behaviorally the same age as your children and pokes, pinches, shoves or slaps them when you're out of the room.

Screaming when you're trying to take her to the bathroom?  Yep.  Your children watching as she slaps you?  Could be.  Very distressing for kids.


jfkoc
Posted: Tuesday, November 19, 2019 7:18 PM
Joined: 12/4/2011
Posts: 17560


I agree...you must have Plan B in place. You simply do not know when you will need it and by needing it I mean it becomes the best solution for all concerned.

In the meantime you need to find a way to bring in some help. You will need more and more help in addition to utilizing day activities for your mother.

You are also going to need  money no matter if you can float Plan A for a while or need to jump to Plan B.

You have a lot of people to take into consideration.


Eric L
Posted: Thursday, November 21, 2019 9:33 AM
Joined: 12/5/2014
Posts: 1197


Something else that I forgot to touch on in my very long post...

I know you mentioned that your mother adores your son. My MIL absolutely adored being a grandmother. I told the kids when she passed that I was pretty sure that the three happiest days in her life were when she got to hold her each of them for the first time. She was a doting grandmother.

My youngest and her had a special bond for a long time. This is the only home our daughter has known and her and grandma spent a lot of time together. They colored and played house. I would imagine that by the time my daughter was in pre-school that their abilities were about the same.

Of course, once my MILs behaviors became more complicated, they didn't have that special bond anymore. She started to snap at our youngest (it was out of character for her). When she was still able to, MIL would control her angry impulses when the kids were around. At some point, she just wasn't able to control it anymore. The first time that she cursed at one of us, I think our oldest almost had a heart attack. After that, it was a pretty regular thing for her to curse and yell at her caretakers when she was upset at something we did (real or perceived).

At that point, she had pretty much forgotten that she was "grandma". The kids ended up spending way more time in their upstairs playroom than they had before. It got to the point where if Grandma got angry, they automatically went upstairs.

I guess this is my way of saying that mom might adore her grandchildren right now, but it is very likely that the relationship will change.
SunnyBeBe
Posted: Thursday, November 21, 2019 10:37 AM
Joined: 10/9/2014
Posts: 786


There are so many helpful comments here, especially, those who have actually done what you want to do.  The thing is though, is that people are different and your LO's progression could be different from others.  For some people mobility is affected substantially, others have severe personality changes and resistance to care.  To me, resistance to care is a biggie and no matter how motivated you may be to care for someone in the home, if they refuse to allow it, it can be very challenging. Do you have any background in nursing or healthcare? Often people post here about how to lift a LO, get their diapers changed when they resist, etc.

 There is a book called The 36 Hour Day that covers some of the needs your LO may encounter. You might contact a professional agency to see  what you might need to equip your home with things like a ramp, bathroom handrails, etc.  Some PWD progress quickly.  My LO went from running her own household to being wheelchair bound and incontinent in just a couple of months. And, she was only 62 years old. 


gubblebumm
Posted: Thursday, November 21, 2019 11:27 AM
Joined: 7/12/2017
Posts: 1334


Something else to consider is sleep schedules.  Don't know how tight your space is or bedroom locations, not to mention staircases and bathrooms, but as the PWD ages the sleep schedule goes out the window, up at night, sleeping during the day, so babies and toddlers naps will all be messed up as well

Its laudible you want to do this, but go in with eyes wide open and be prepared

My mom lives with us, in an inlaw, we can hear her sobbing at 2am, she sleeps in the nude so husband can't go in her place, she goes through phases and its like dealing with another 4 year


kbl54
Posted: Friday, November 22, 2019 12:44 PM
Joined: 4/30/2019
Posts: 3


Thank you so much to everyone who has read and replied to my post. I appreciate your honesty about the disease. It has helped to start a dialogue about a Plan B if we find that we cannot care for her at home for whatever reason. I also greatly appreciate that many of you shared your personal experiences managing the illness while also caring for your children.

My heart goes out to all of you who have been touched by this disease in any way. Know that your experiences have helped me and my family as we forge onward with caring for my mom the best we can.


Eric L
Posted: Saturday, November 23, 2019 1:25 PM
Joined: 12/5/2014
Posts: 1197


KBL - I'm going to take a little different tact in this reply. I focused on the more negative aspects of keeping MIL at home. This will be a bit more of a hindsight kind of post about things that we could have done differently to make things a little better for everyone involved.

If you do choose to keep Mom at home, hire help before you think you need it. You might need to go through a handful of different caregivers before you find the right fit. With the kids, it's important to find someone that won't be bothered by their presence. I would also say to try to find someone that doesn't need constant guidance. More than likely, you'll need to find time to hide in your room with the baby to take a nap. One of the things that I really appreciated about our full time caregiver that we had towards the end of MILs life was that she took care of her husband with dementia (and was a retired LVN) before she started working as a caregiver. She told us one day "You know, there were days with my husband that when my lady came over that I just looked at her and said "I need to take a nap"". You want someone that doesn't need to rely on you to redirect Mom during those times.

As has already been mentioned, start working on finding a geriatric psychiatrist right now since Mom is already starting to display difficult behaviors. You'll want to have someone that you can contact ASAP when behaviors change. It seemed like we had to adjust MILs meds every 3 or 4 months. Things would work for a while and then it wouldn't and adjustments needed to made.

And also, really talk to your spouse. I am "the spouse" and I am grateful that my wife took my opinions seriously. Find out how much he plans on helping you. I wish in our "triad" with my wife, her brother, and myself that we would have really discussed how we were going to divide our responsibilities and what each person was willing to put in. It's mostly water under the bridge now, but my wife and I ended up doing a lot more of the heavy lifting even though my BIL was insistent about keeping Mom home. I wish we would have said "If you want (x) then you need to do (x)" and we never did that. I know this isn't entirely relevant to your situation, but you don't want to find yourself in a situation where one of you resents the other (because to be honest, as much as I say it's water under the bridge, I'm still pissed at my brother in law).
RanchersWife
Posted: Saturday, November 23, 2019 2:01 PM
Joined: 3/14/2018
Posts: 189


Also, your spouse needs to be "in" 100%.  If they reach their line and say so you need to listen.  If they voice concerns about your well being you also need to listen. It's an always changing situation that has to be processed and dealt with. 

Being my mil's caregiver has strengthened my marriage but it has destroyed many marriages, I'm sure.