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how to manage mother with young-onset Alz and two very small children
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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.
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
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.
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.
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.
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.
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
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.
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.