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Merla

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MN Chickadee

In some ways, no. It's a terminal illness that robs us and our LO of so much, and the person gets lost in it and we can't even have the meaningful goodbye that would come from cancer or other illnesses. But you can definitely find moments of joy to hang on to. I too had small children when my mom's Alz really picked up speed. Those years were marked by sadness and grief and being spread so thin I didn't have time to think. She was physically healthy and strong for much of her illness and sometimes it seemed like she would live forever with a broken brain. My advice would be to let the grief in, there is no way around it. If you don't it will find you anyway. But also make joy with her. I have some fond memories from our visits at her memory care facility. Smiles, giggles, a lovely birthday party I threw for her etc. You take what you can get with this disease. Since my mom passed a couple years ago, one silver lining is that I definitely see life as more precious now. I am happier than I have ever been and try to live each day without regrets because we just don't know what fate has in store for us. Good luck and best wishes.

Watson1

I think MN Chickadee response to so tragic and sad was right on the money. These forums are very important to all.

housefinch

@Merla I saw your question about a person with dementia living with young kids and wanted to offer my perspective. Feel free to ignore it, though, if you disagree with it 😘. I have a 9 year old with autism & an intellectual disability who functions at about a 3 year old level. My stepdad has moderate dementia and lives with my mom in another state. About a year ago he was having significant agitation with any visitors to their house, such as relatives for the holidays (my mom has not educated herself on dementia and is still holding large formal holiday dinners, etc & blames the visitors for making my stepdad upset, etc). Anyway, he now has intermittent urinary & fecal incontinence, very poor judgment, irritability, etc. I will not even let my kids stay there whenever we visit in the future because my 9 year old will be very stressed out and not understand his behavior. I would recommend not taking on your mom’s care, personally, if you have another option. Watching my mom repeat a cycle of denial now, about a difficult reality, unexpectedly stirred up tremendous emotional distress for me about some past behavior of hers. I’m now in therapy for it and working on setting boundaries to protect myself and my family. If needed, I would encourage you to consider that, too. My opinion only. Best wishes to you.

harshedbuzz

@Merla

Many folks here have struggled to balance Alzheimer caregiving with raising children or even making time to babysit their grandchildren. It's very difficult, especially for younger kids who don't have the ability keep themselves safe in the context of an adult who isn't reliably trustworthy.

A common scenario is that the PWD identifies their adult child-caregiver as their personal property and will resent that caregiver tending to their child's needs. Additionally, with the loss of a social filter, you mom could speak or behave in a manner from which you might want to protect young children.

My sister's MIL with dementia liked her 18-month-old grandchild, but that didn't stop her from putting darts in the child's Easter basket. Another poster here was caregiver to mom and daycare for her granddaughter. Mom didn't like sharing her caregiver and was quite verbally abusive to the preschool aged little girl. She also sprayed her with what she thought was Raid once. It turned out to just be a spray bottle of water to dampen the ironing, but still not cool.

You don't get a do-over with your children's childhood. Personally, I would delegate mom's hands on care to professionals and be her daughter and advocate.

HB

SusanB-dil

Hi Merla - so sorry you are dealing with 'this'. As MN Chickadee said, it is terminal, and it is sad. You are grieving the person that 'was', even though she is, sort of, 'present'. Is there someone you can talk to? A counselor, pastor, or even an alz support group might help.

Unfortunately, 'this' only does get worse. With two very young children, I would personally NOT recommend her moving in with you. And not only for the safety factor, but that it will be an awful lot to manage.... a LOT to manage. 'This' is hard even under the best of circumstances. And being that young, they are not going to understand certain behaviors that come along with 'this'. They will not understand why so much attention has to go to her. Caregiver burnout is real.

sbp5989

With young children, I would definitely not bring your mother in to live with you. Although I don't have young children now, I did experience the inappropriate and unfiltered comments my Mom with Alzheimer's made to my brother's daughter which were a contributing factor in his decision not to see his Mom or have his daughter (who is a young teen) see her Grandma any more - he cut off any communication or visits with her (and yes that leaves it to me.)

My Mom is in a memory care facility since May and has progressed from a Stage 4 last year to entering the last stage currently. I get a few good memories but not much anymore. I am dealing with a 2 year old for which there is no hope they will get better - a key tragedy of this disease. Yesterday, my Mom asked me if I was her Mother or her daughter. It is beyond tragic and wearing answering the same questions 100x a day - even with my Mom in a memory care facility. Another reason it is called the grieving disease - I've been grieving the loss of my Mom for 3.5 years and the impact it is had on my personal life is damaging at best.

So if I were to give any words of encouragement it would be to find a facility and be her advocate when time allows. And if there are any support groups offered by your county and you can find the time please take advantage of them as caregiver burnout is real.

MN Chickadee

Personally I would not have a PWD live with young children. Others here have done it but it is not a position I would willingly put my own family in. Your kids need to come first. They need you as a full time parent. They need to be safe and comfortable in their home in order to grow and be happy. A PWD puts that all at risk daily. Both safety reasons (like starting a pan on fire in the kitchen or leaving objects out a toddler shouldn't find) and general temperament of the family home. PWD tend to not do well with children at a certain point. Kids are noisy and unpredictable and this is not what a PWD needs either. We got to the point where even short visits were difficult with mom and the kids. She was overly critical and picked on my 4 year old all the time. That wasn't something I was going to subject my kid to, it just isn't fair to them when they are too young to understand the disease. So visits became shorter and more rare for a while and I always brought something to occupy the kids to control the situation. Eventually as mom progressed and started talking less she mellowed and I was able to have her around the kids more.

Also consider that as a PWD progresses they essentially become like another child. In the middle stages they have the judgement of maybe an 8-10 year old. In the later stages they are like a toddler and then a baby. They require 24/7 supervision and entertainment, help with bathing and toileting and eventually diapers. Taking this on when you already have a baby and preschooler would be an enormous thing; don't take it lightly. I found peace with having mom in a nearby memory care facility where she could get the care she needed, I could visit often and oversee her care and advocate for her but be her daughter and not full time caregiver. My kids could have a peaceful home and a mother who was able to be present physically and emotionally. I know for certain in my heart that's what my mother would have wanted for me and her grandkids. This phase is so, so hard. I feel for you. All the potential, the hopes and dreams, the finances, the grandparent relationship all down the drain. The grief for all that you are losing starts long before the funeral. People who haven't lived it don't get what this limbo is like; like a partial death of the person and the loss that starts years before you have the solace of your LO passing and being released from their disease and suffering.