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Are there any other caregivers here with young/younger kids? I am 36 and take care of my mother with Alzheimer's. I have cared for her the last 5 years and she has lived with me the last 4 years. It has been hard, I have a 9 and 11 year old and a husband. However, the last 6 months have been extremely hard as mom has had a huge decline. She is no longer able to be by herself. I had to quit work and I'm starting to have financial issues. She wants me with her 24/7, even if she can't remember who I am, she knows I am her comfort. I am starting to get stressed out and getting resentful and I hate that I feel this way. I am missing out on a lot of things with my kids and I don't have the energy to do anything after caring for my mom all day (and sometimes most of the night). My mom has no concentration and does not enjoy doing anything anymore. Most evenings I am dealing with her sundowners, crying, anger, wandering. If she sees me laughing with my kids she causes a scene to get the attention back on her. I feel like I am constantly on guard trying to keep everyone in the house safe. She says mean things to my kids (her grandkids), things like they are stupid because they were watching TV. I know it is not really her, it is the disease and I explain this to my kids, but still hard. I have been diagnosed with high blood pressure and feel like I have no time to care for myself. I hate the thought of putting her in a nursing home, I honestly don't know if I can do it. But I don't have much help and feel like I have to take care of my family too. This has been really tough on my kids. I am looking at options right now for adult daycare. Anyone else going through this?

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Adult daycare really isn't enough b/c you still have to deal with mom when she comes back home & stays up all night causing commotion. AD continues to cause problems for the elder, thereby causing more & more problems for you and your young family. Having your children exposed to an angry grandmother hurling insults at them, even though she 'doesn't mean it', isn't a good thing for them to be experiencing.

I grew up in a house with my grandmother & mother who fought all day long; my mother was burned out and resentful for having her mother there, and martyred herself for 'all she was sacrificing', so we ALL wound up paying the dues for that mistake. My childhood was ruined in the process. I grew up not liking my mother as a result of the environment she exposed me to and moved out when I was 17. I'm only telling you this story to you can perhaps benefit from it; not for any other reason.

Unless having an elder living in your home works for ALL family members, it's not working at ALL. Everyone has to be happy & nobody suffering as a result of the elder's behavior or habits, is my point. A person with AD can't help their behavior or habits, but by God, they ARE affecting EVERYONE in the home! Everyone is burned out, exhausted, walking on eggshells wondering what grandma is going to do next!

My mother is 95 with advanced dementia & lives in a great Memory Care AL 4 miles away. When I speak to her on the phone I don't know what delusion she'll come up with next, or what fiblet I'll have to devise to talk her off the ledge when she demands to know where her mama is. Or if she'll be screaming & carrying on or happy & cool as a cucumber. I'm 64 and she makes me nervous; imagine being a kid and wondering what grandma is going to do next and how that may feel to THEM?

Dementia/AD is the bad guy here, nothing else. Your mom can't help it that she's sick and it's not her fault. Your first priority needs to be with your husband & kids, however, and that means finding suitable placement for mom now that she's declined to THIS degree. Because what's coming next is no scenario for any of you to be exposed to 24/7.

The staff at my mom's MC handle her beautifully; the NP comes in weekly to see her, now that she's on hospice she gets 3x a week visits from their staff as well; they're able to get her meds sent in w/i 30 minutes of an order, the staff love her & she's pretty happy there, all things considered. My DH & I go visit her 2x a week and it's as good as it CAN be, under the circumstances.

People here will tell you the standard Horror Stories about managed care but I'm here to tell you from firsthand experience that my mother has NOT had bad care with ANY of the ALs or SNFs she's been involved with. But for one SNF she went to for rehab which I pulled her out of and got her into a very nice one a week later, that was the only bad experience we've had since 2014, for both of my parents.

Try daycare, maybe, while you scout out Memory Care ALs if she has private funds to pay; SNFs if she needs Medicaid. Plan to go visit her frequently and realize that your mom is living in a different place in time now. That's why she doesn't recognize you; b/c she's 20 or 30 years old again and you weren't born yet! That's how AD works; they regress in time, going backwards until they're toddlers again. They forget people along they way who weren't there at that point in time! Your mom 'knows' you as a source of comfort, but can't place your face b/c you weren't alive at the time she's at NOW. When you go visit her, she'll remember you as the 'nice lady' but not as her daughter. So she's at a good point to BE placed now; where she won't be crying for 'her daughter', you know?

Wishing you the best of luck with whatever you decide to do.
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OkieAmber13 Feb 2022
Hi lealonnie1,
Thank you for sharing your experiences. You are right, it is not fair to my children. I am also starting to feel like I don't even remember my mom as she was before this disease since I have been caring for her for so long.

My mom has no private funds so I have applied for Medicaid for her, we are just waiting now.

Thank you again!
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I’m SO in sympathy with your fatigue and sense of loss of time with your children and family and your physical problems and resentful feelings. I experienced it all, and ONLY for 9 months.

You’ve been doing this for long enough to know that much too much is on you, your children are living under the shadow of their grandmother’s current comments. You understand her comments as part of her illness, but they shouldn’t be expected to.

”…..putting her in a nursing home….” has become the monster in your mind, and if you are able to examine the residential facilities in your area, you may be surprised to find how pleasant some of them are, and how inaccurate your thoughts about them turn out to be.

I’ve “gone through this” TWICE. The first time was finding a safe place for my mother to live, after taking care of her in my home for 9 months.

After I gained 60 pounds and averaged 4 hours of sleep per night for those 9 months, we finally decided that we had to find a clean, safe residence nearby. By the Grace of God, we did.

I drove her there with tears streaming down my cheeks, and the expectation that she’d be dead in 6 months.

She lived 5 1/2 of the happiest years of her later life, and died peacefully at 95, surrounded by the caregiver staff that loved and spoiled her, and whom she dearly loved in return.

Find a residence near enough to visit every day, if you want to. I did, every evening after working all day, and twice a day every Saturday and Sunday.

It’s time for you to sleep better, have fun with your husband and children, and leave some of the responsibility for her care in the hands of others.

Give yourself permission. Maybe it’s even past time.
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OkieAmber13 Feb 2022
Hi AnnReid,

Thank you for your response! It has become too much, for myself and my children, you are right. Hearing your story makes me feel so much better. You only hear the horror stories, but never the good ones. It helps so much to hear from people that have gone through this. Thank you.
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Time to place Mom. Your husband and children are your #1 priority. You should not suffer financially to give her care. She is beyond what you are capable of giving her. Your children deserve their Mom.

My SIL raised my nephew for 11 yrs. She had two of her own children, at that time 12 and 9. At 12 a girl needs her Mom. My niece said her Mom was not as "happy go lucky" when she took on my nephews care. He was 7 and a handful with his disabilities. One being defiant disorder. No help from our side because we live 8 hrs away. My one brother with Toddlers and me with a daughter and her toddler son living with me. We did pick him up to spend 2 weeks in the Summer. She would not let us have him any longer because my parents would not stick to his routine.

Really, a burden will be taken off your shoulders. Moms needs will be met and you can visit.
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OkieAmber13 Feb 2022
Hi JoAnn29,

Thank you so much for your response! I appreciate the support!
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Hi Okie,

None of us embrace the thought of placing our parents; that's why we're all here. I don't have children at home - mine are all grown. However, if I did, I wouldn't be a caregiver to my father. The demands of being a full time mother are enough (and too much) by itself - and it's my personal opinion that they shouldn't have to share you. Your kids need you and deserve to have a mom fully engaged and present in their daily needs. Deep down, it sounds like you know that too.

There's no guilt in being a great mom.
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OkieAmber13 Feb 2022
Hi JustVee,

Thank you so much for your reply and support. You are right, deep down I do know what I need to do. In the back of my mind I have these thoughts though that I am not trying hard enough or there is something I haven't tried yet and I can make this all work. But it really is not fair to my kids the situation we are in now. It is so nice to be able to come here and talk to people that understand. Thank you again!
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As others have mentioned if one person especially children are negatively impacted you have a moral obligation to place your LO for their safety and wellbeing. Everyone must be on board when it comes to having a house guest especially one with memory related issues.

Please for the love of God do not buy into the fear mongering of LTC. You need to do the leg work and even then it may not be perfect but you cannot let perfect be the enemy of the good. You must do what is best for your future end of story, trust your LO care to professionals. Say the worse does happen they failed not you, we are not meant to care for our elderly at home, our culture is not structured as such. We have far too many responsibilities, and obligations that must be a priority.

Do what is best and place her ASAP.
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Well you have certainly done yeoman's work in providing loving care for your mom! And blessings to your family for their patience with it all. It does provide a wonderful learning experience for your kids -- up to a point -- especially when they are too young to process why Grandma now freely says the "n" word, sexually explicit stuff, wildly delusional accusations and body shaming (as does my Aunt with mod/adv dementia). Your mom may never do any of this (and I pray she doesn't) but with dementia some of this is imminent.

Your husband, kids and mother deserve a mentally, emotionally and physically healthy wife, mother and daughter (not to mention YOU need YOU to be your best). It won't happen as you struggle, stress and stretch yourself, for you cannot imagine what is coming over the next hill (but our forum participants are seasoned and they DO know).

You can certainly start by finding adult day care in the interim (and your mom's resources should pay for it). Check out local churches and faith organizations, which might have less broadly advertised but also more affordable programs. Or hire a companion aid to entertain your mom, etc. Many of today's MC facilities are nothing like the crummy ones of yesteryear. Your mom will have more social interaction and opportunities for activities, events and outings -- something you'll be less and less able to provide for her. She'll be safe and cared for and you will all have your sanity and privacy. You can visit her as often as you like. Transitioning her does NOT mean you don't love her! You've done your best to date, and placing her is still doing your best, it just looks different. May you receive peace in your heart that it will be ok.
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OkieAmber13 Feb 2022
Hi Geaton777,

Thank you for your response. My mom is starting to get to that point. She says wildly inappropriate things. She came out from her room from a nap with no bottoms on, luckily I caught her before my kids saw anything. I know I will not be able to handle it all as things get worse. Thank you so much for your kind words!
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OkieAmber

Please place your mom. You have crossed the line where what you do for her is as helpful as what you aren’t doing for your children is harmful. It matters.

Big Hugs. We are here for you.
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Your post is truly heart breaking. You are so thoughtful to reply to so many. Many people come here and get advice and are never heard from again. You also are going through this at such a young age with so many years ahead of you. The majority of us are around in our 60's with parents 20 to 30 years older.

I am 65. My mother is 91. She has been in AL since 2013. She has a host of ailments but I am fortunate that she knows who I am and is grateful when I visit. She made the smart decision to buy a LTC policy for herself years ago. That has been used up now. She has some other funds to pay for her care for awhile.

The only suggestion I have for you is possibly paying for a lawyer to help with the Medicaid process if you are finding that too difficult. There are lawyers who have fair charges. We have friends who went through this after the husband suffered a serious and altering stroke. Their lives changed almost overnight. The lawyer was able to get the husband on Medicaid. He has a full-time aid as his wife still works. All their expenses are covered now by Medicaid.

I hope you can place your mother and know that is the right choice. You and your family deserve a future. There is so much more life for you all to live and to live with positivity.
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OkieAmber13 Feb 2022
Thank you for replying Riverdale. I honestly appreciate everyone who takes the time to provide advice. This is one of the hardest things I have done, caring for a mother that doesn't even know me half the time. And at the same time trying to raise my family. It is just too hard. My 9 year old told me yesterday that he likes being at school now more than being at home because it is too stressful with grandma and that grandma doesn't even know who he is. This broke my heart. I am nonstop crying. I definitely have to place my mom. Maybe I am just too weak to make it all work, but I cannot have this hurting my kids.

I was adopted, so I am 36 and my mom is 75. My dad died in 2007 from cancer, and honestly my mom has never been the same since. Unfortunately,she has no LTC insurance. (I will definitely being purchasing this). I applied for Medicaid for her and we just found out she was denied due to the cash value on her life insurance being $2,000 over the asset limit. I am probably going to need to seek assistance getting her approved. Thank you for the tip about the lawyer. I am hoping they are not too expensive.
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