My mom has moderate to severe dementia. I have two siblings....neither of them have had hardly anything to do with our mom for decades. I am the youngest of all of us. For the past three months I have been staying with mom 24/7 every day. No break at all. Because she had three falls within a short amount of time within one another, I have not had a full night's sleep since being here. Every noise I here, I fear it is her, getting up without calling me. I get out of bed very early (4:30-5:30 a.m.) just to get coffee in me and be awake if/when she gets up. She forgets to call me when she gets up, so I walk/pace back and forth to her room to peek in and make sure she is still asleep/is not getting up. This is my life now.
She doesn't even know who I am most of the time, and then when she does "remember" me, she says that she and my (deceased) dad only wanted two kids and when she (as she put it.........) made the "worst mistake of her life and got careless and had me" they gave me up for adoption. This never happened. I deal with confusion/frustration/agony/depression/sadness everyday. Throughout the years I have always been there for my mom. I have for years and years called her everyday, sometimes multiple times each day; I have bought her things she said she needed; I even bought things and sold things for her on Ebay helping make money for her, knowing she was much more well off than I have been. Since I have been here, for weeks she called me by my sister's name and then when she finally "knew" who I was, all of this "unwanted baby" stuff comes up. She even said earlier today, "Do you see the people who adopted you very often?", right after I got her out of bed, to the toilet, and seated in the living room, with her breakfast. Any advice?
Also, earlier this year, her medicaid form got denied. Between her pension/social security, as well as cash value in an insurance policy, she exceeded the limit of income/assets...not all that much...but did exceed it.
There are small things that might help, eg a pressure mat beside her bed that would let you know if she does actually get out of bed. But the real issue is to face the fact that this is not a viable situation, and start looking at the alternatives. Unfortunately, putting her on Ebay isn’t an answer!
I am getting somewhat numb as far as her not knowing I am a daughter she raised/didn't give away.
I have thought about one of those pads but they look like heating pads...I am paranoid and worry about anything electrical being under her body.
Are you staying in her house taking care of her because you've fallen on hard times financially and can't afford to live somewhere else? So many times that's the reason why a person is caring for a parent like yours. If you're financially stable enough to live elsewhere, then put her in a nursing home and be done with it. It will be the best thing you ever did for yourself.
1) Education -- I used "The 36-Hour Day" book as my almost daily, as-needed bible (but there are good resources, too);
2) Support -- I got mine from my wife, from three Alzheimer's support groups (that also provided education), and from one sibling (and almost none from six other siblings);
3) Baby Monitors -- I actually used 3 of these, 2 audio and one video/audio, which allowed me to get more sleep than I otherwise would have, but still not nearly enough.
One other quick thought that might help you -- during the five years that I was my dad's primary caregiver, he mostly thought I was his dad, but sometimes I was one of his brothers, and, almost magically, once in a great while I was his son. During the first few months of this confusing journey, I usually tried to explain to him who I was (often with old pictures), until I finally realized it was much better for his contentment to just go along with whatever "memory" he was having at the moment.
Kudos to you for providing your mom's care. Best wishes for both of you on this difficult journey.
That’s on top of the hurtful ravings.
Why are you doing this to yourself, friend?
Dementia reaches a point where most of us cannot care for our loved one at home anymore. I think you're there, don't you?
Good luck!
You can’t keep this up without help, be it in-home, or at a Memory Care facility. Your own sanity is at risk.
This forum is a great place to find some answers that will work for YOU, as well as your mother.
I wish you well.
Things your Mom is saying "never happened". Don't even stop to consider it.
Maybe leave the room, distract her.
It is her sanity that has gone, not yours.
You have the wherewithall to seek help!
If you put it at the base of her bed where her feet land, it may start to ring when her feet hit the floor.
My concern is you would get a few false positives if aiming it at her on the bed.
So limit the area being monitored might work.
A baby monitor in the room might also work, and decrease your time awake worrying.
I am not trying to be mean here, but... that just doesn't make sense. It's a bit like "But I get 20% off if I spend $100 or more! So I need to buy more to get that 20% off!". Even though it ultimately means spending more money and thus you don't really save anything!
You HAVE to get back to your 'old life' and have mother placed. There is no other option. It's either that or you will indeed be broke, and when your mother passes away, you'll be homeless too. And it's much, much harder to claw your way back as you get older, when you have less energy to do so. You'll be broken mentally, physically, and financially if you keep this up. You don't deserve that.
It sounds like you're using the "I can live here rent free" as your reason to keep staying there... thus avoiding the guilt you'd surely feel if you placed her.
There is a reason your siblings want little to do with her.
Unfortunately, you won't get the happy ending you're hoping for here. Mom will never love you like you deserved growing up. She will never appreciate you or be proud of you. Those old wounds will never be mended. Some mothers just can't love, and it's not your fault. I'd be willing to bet she treated you like this long before dementia kicked in.
First off, you are a saint for having the heart and strength to care for your mother. You have honorable intentions and it speaks to your character. People like you ARE wanted and needed :) Never forget that!
We take on caring for a parent because its the right thing to do and we have the very best intentions, but zero heads up on how crazy it can be and the full spectrum of emotions that come along with it.
The physical and mental demands are rarely understood unless you have experienced them first hand. You are trying to learn and adapt to her physical needs, while being a target for her emotional turmoil.
I understand what it feels like to sacrifice everything to help a dependent loved one in need and then be surprised by the unresolved emotions at come along with everything else. You are trying and doing the best you can, inspired by the kindness and love you want to show to your mom.
I commend you for not taking the easy route of putting your mom in a home without even trying. You are braving the storm and giving her more love than she would get in a home. Be proud of how awesome you are and for having the strength you have to take the bulls by the horn (for now). Remember to value your boundaries as well. Only you can decide when enough effort is enough.... financially as well. Never think for one second that you are a failure if you decide that a home or other living arrangement would be best for both of you.
I am walking in your shoes and have yet to find a moment to myself or even leave the house for more than an hour to get groceries in the last 3 months, but I make sure my mom doesnt skip a beat for what she needs. I am working through childhood wounds of her never caring for me as a child, but here I am. 24/7 ,so I understand the resentment that can be felt from time to time.
I understand how hard it is and sanity checks are far and few between. I understand the depressed state you are in, I understand that it takes time to find the right care and still hold out hope for respite care someday. I hope your sisters step up more and dont be afraid to have them provide a respite for you.
A baby monitor in the main rooms, helps me to keep a watchful eye, listen and talk to my mom as needed. Even though her words about your conception may be exaggerated due to her mental state, it still hurts. Try not to take it personally and know that those are her demons to deal with, not yours. This experience will make you more resilient, patient and perhaps assertive.
You are not alone. You are a beautiful person. You are doing the right thing. Cherish the small victories and moments of clarity. Remember that this too shall pass. Set boundaries and know when its time to protect "you" and put yourself first...until then, find moments of light and bask in them.
Best wishes as you navigate this part of your journey :)
I don't mean to be rude, just curious as to your motivation - to see what direction could be useful for you.
Meanwhile, here is the link for your area: https://www.vpas.info/caregiver
These people should be able to give you good advice and point you in the right direction when it comes to practical support.
So that's that bit. Then, what about this massive elephant (if you'll forgive the mixing of metaphors) your mother keeps mentioning?
Is there any other family member who can fill you in on what the heck went on in your mother's history? This is the purest guess, but do you think it's possible she is expressing guilt and fear about the past? You might need to brace yourself, but perhaps there are truths you need to hear.
I know how hard it is to lose your parent mentally. I pray, vent, and take it one day at a time! Prayers for you and your mother.
1. Whatever mistake she made, it wasn't your doing and - given that you knew not a thing about this ever before - you can't have been the mistake.
2. There may have been some narrative which she couldn't tell to a soul. If you can do anything towards understanding what happened, good; but remember that this is about understanding and not about judgement. If anything does emerge, be kind to her and to yourself.
Having said that, the social worker you spoke to seems not quite to have thought the situation through. Present it again, only this time stress that your presence and your support for your mother must be temporary - put a date on it, in fact, which will be good for you too.
Then, so, in x weeks' time, Mrs UnwantedOne will be an elder with dementia at risk of falls living alone and you should see an abrupt change of mind from social services about the support plan for her. The risk:benefit ratio will rebalance dramatically once you're not a factor.
You do have to do this. You cannot stay indefinitely. You cannot stop your mother aging, falling, or progressing in her dementia - not even if you could stay awake 24/7 and hang over her in person. And you cannot continue to do what you are doing alone: you will break, and then she will not even have your advocacy and she really will be on her own.
Ask her PCP for a social worker to find some respite help. You are headed for a breakdown and cannot keep this schedule up without help. Is mom mobile and can she do anything for herself? My mom plays games and can easily be active and care for herself when she chooses.
What about the possibility of moving your mother to Richmond and into a memory care facility close to your home?
I think it would be worth it to talk to an elder care attorney who can advise you the best way to get your mom approved for Medicaid. A good attorney can get her qualified. There are things like a Miller trust, and other ways to work around her income.
Maybe the sister who has been coming around recently would be willing to assist in the move?
It just doesn't seem sustainable for you to stay in the current situation. You are already burned out after 3 months (I don't blame you), so this is just going to get worse. You need to get back to your life in Richmond ASAP, to your work, and to your significant other.
Please keep us posted. You can change the situation, and we here on the forum can support you along the way.
You live in Richmond, where is your mom? I'm wondering if it would be better to consult with an attorney in your state, if moving mom to a MC in your state seems like a good solution. That way you could visit as often as you wanted, and still have your own life too. You could always bring the good food you make to your mom at the facility.
I'm in FL and the vaccines have started here for those over 65 and those in facilities. Hopefully all the covid restrictions will ease up soon.
Your weight loss is a bit concerning, but I can relate to the stress. Eat some of that healthy food you are cooking, and watch out for your own health. You have a life that you will eventually get back, and the healthier you are the better you can enjoy it.
I am so glad that they have started the vaccines in your state for 65 and older and in facilities...Hopefully, it will bring peace of mind to so many.
I am having to force myself to eat what I eat. I think I walk/pace of calories off....as I am always jumping up and checking on her when she is asleep. I wake up earlier than her...have to get that coffee in me and be alert. I don't want to be sleepy when helping her from her bed and walking with her. She cannot get up and down by herself now safely. She does, when I am not watching her every now and then, get up from her chair and will be walking on her walker. (A nightmare for me, as she gets weak very easy, even using the bathroom.) I just don't want her to fall again. The last time she fell, she broke two ribs a few weeks ago. I was a few feet away from her. I had been doing all the exercises the PT did with her when coming alongwith other home health care aids for several weeks. I did the exercises on the days he didn't come and thereafter. She became stronger. I was right outside the bathroom getting the polident for her partials. She got up from the john and turned the wrong way and fell. i was within feet away from her. I felt/still feel like a failure. Had to call the squad and I was bawling like a baby. I had watched her like a hawk, or so I thought and she still got hurt. The NP at her doctor's office said no way could I manage her the way I had been and she needed 24/7 care more than I could provide. Unfortunately, like I said, covid has broken out. I have thought about taking her to Richmond, where I live, but my ex (who I keep in touch with on a regular basis, and who has been taken care of his uncle and aunt for years, uncle with alzheimers (who has passed away) as well as his aunt(now in AL...told me it is harder to get any of them in any nursing homes or AL places there than where I am...long waiting lists.)
I don't mean this in any way in regard to my mom, but if i ever get what she has, I hope I don't last. My only daughter has had nothing to do with me for over 10 years --when her dad and I divorced. I have literally no one who is going to do for me what I do for my mom. I cannot imagine having what she has and having no one to take care of me....nor do I want anyone to have to go through this. But I will try and hang on as long as I can to take care of my mom. My sister won't answer most of my emails. She says they don't go through. I have sent her one begging her to call me saying I was at my wit's end. weeks later, she said she "answered" my several emails....I never got any answers from them....just one saying she answered them and wanted to come see mom. I realize that all of this is on her agenda. I am grateful she is in mom's life after over 20 years of having nothing to do with her....but still I am extremely suspicious and cautious. When the POA was brought up and I said Mom really wanted my brother to be her POA, but he never showed up when he said he would, my sister said she thought all of us should be POA. Really???? Both of them have had little or nothing to do with Mom for decades. But now, with me not really being her "real child" in her mind, I cannot push for her to sign anything making me have anything to do with any of that, nor do I want to. It has to do with her wishes, and I will abide them. Sorry to share/unload so much. I am a mess as you can see. I'm scared. This is not the way I wanted to live my own later years. Mom had hardly anything to do with her own parents care. She thinks from time to time her parents are still living. She even remarked to me a few weeks ago, that she knew her mom was going to expect her to come take care of her, and she wasn't going to help her at all. Really stings.
What's that saying? Setting yourself on fire to warm someone else.
It seems to be you are a natural fixer & have indeed fixed things after the hospital stay. But fixing old age or dementia is just not possible. Many carers die trying.
So. I agree with the recent posts. Go home.
These are the choices I see;
1. Go home.
Place Mother in a facility local to your home. Continue to be her advocate & emotional support. Be her loving daughter who visits.
2. Continue as you are. Risking your health & relationship. Let the future force the direction.
What the future brings will depend on who breaks first. If Mother, she will go from hospital to rehab into care. If you, your Mother will be moved into care.
So I suppose it is about whether you can or will take charge to plan the direction - or let fate decide.
I am a planner. But my relatives live in denial & will not plan. So they have (by default) chosen fate.
Won (I abrieviated your name 😃), what would you LIKE to be the outcome?
I have to get her Medicaid app sent in. I am not sure if I said this (I sure don't want to read through all the postings I have written :) but it was denied earlier this year....the social services man said it would be a good idea to see if she qualified for the Medicaid Waiver in our state, which she does...as she met all the criteria necessary about the daily living things she is unable to do by herself. However, there is cash value in an insurance policy she has had for years designed to take care of her funeral expenses. The CV is as high as the face amount. I was told by the woman with Medicaid/social services dept who handled her app that she could only use $400 of this toward her funeral expenses. Nothing was said by her that Medicaid would take it all....which would be fine with me and I could figure out how to pay the remainder she would need for final expenses just to get her app approved and her application accepted. That is the main holdup to get her in, then with covid, another thing. She has lived in this city, attended same church for years here and her friends are here. Not to be overly morbid, but I know I could not afford to pay for her to be brought back here for her "final arrangements" as well as her pre-planned funeral she signed a contract with at the funeral home, which she did not pay for at the time. She told me it would be "up to someone else to deal with". She was right about that.
And thank you for the "won" abbreviation.......very nice and I would like to think my choices (or poor choices) won't end up being "lost".