I Live 3000 miles away from parents
I work full time and while at work I need to focus on my job so I don't make mistakes. On Monday mom called me and said she was almost out of her insulin syringes and could I have some delivered. I called her during my break and she was down to just a few syringes so I didn't want her to run out. I messaged a couple of friends but they were unable to go to the store for her. I tried to call the pharmacy and have them sent instacart but by that time it was too late her time and they could not deliver. I ended up missing my transportation to leave work as I was trying to get this arranged for her and got home quite late. When I called mom to tell her we couldn't have the syringes sent that night but her friend could pick them up first thing in the morning, she asked me why I waited so long. I just didn't say anything, didn't tell her I was at work, didn't tell her all the effort I put into it because it doesn't do any good.
Today a friend was going to take mom to see dad and we were excited because it sounded like she really wanted to go. It's always good for her to get out of the house. As usual, she cancelled at the last minute and said she didn't want to go. The friend went to mom's house anyway and offered to pick up groceries or some prescriptions. Mom said no she didn't need anything. She promptly called me and started in on her "why do you live so far away" mantra that she repeats all the time. She said she didn't like me having people check on her and offer to help her. Basically, she wants me there so I can do everything for her. She needs help, but she is not willing to accept the help offered.
Because of the time difference, my work and the amount of time I spend with her issues, I feel that my dad gets neglected. I don't call the nursing home enough to check on him. I did make him a book of memories, of pictures of his life and family that I'm told he loves. I also send him cookies now and then.
We cannot move back to be closer to my parents. My husband has his own health issues and cannot take humidity or long snowy winters where my parents live. I am the primary breadwinner, my husband is on SSI. I do most of the work around the house. My dad is so fragile now that I do not think he could be moved out here closer to us. The change to the nursing home was traumatic enough, but two plane rides, car rides and a new nursing facility would only make it worse. Even if mom were here, she would complain about everything.
I just needed to write this out for some sort of peace. I feel guilty all the time for not helping out more and fear something will happen to mom. She tells people we never call her. Everything is negative and a complaint. I need to set up boundaries but do not want to neglect her.
Thanks for reading.
Comments
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Hi mountainloon, have you thought about hiring a professional care manager? It might be worth looking into. You might have to come up with some excuse to get your mom to accept it, even telling her its a free service offered my Medicare or some such. Just a thought. Sounds difficult all around and im sorry.0
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I have come to the conclusion that some elders are just like this. They can't adjust. Try not to take it personally.
Iris L.
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Hi there.... honestly, I think you are doing the best you can possibly do under the circumstances. My parents would not move near us, either. Same as you, my Dad had a bad stroke. Then, it was too late to move him. We went thru 18 months of trying to help as much we could, supporting them as much we could and he passed. My Mom would call us to tell us we needed to come to fix her slider screen door which came off the track... etc. She was unable to understand why we couldn't drive 14+ hours all the time and it took about the same amount of time to fly IF we could get a flight. She was angry all the time.
It all took a huge toll on mom (and me) which probably contributed to her onset of dementia from the stress. She was angry and resentful and still wanted to live out her days in their home. She carried on with a friend who really had her own interests at heart (meaning mom was company to her) until that no longer worked due to mom's declining mental status. We finally just took over and moved mom to us. She really did not adapt well and would not live with us. We tried a couple other things and nothing worked so assisted living was the solution. It wasn't easy.... honestly, the assisted living called a lot and looked to us to fix a lot of her behaviors, etc often). I guess my point is that even if they moved near you, it is about as hard one way as another. I hope that gives you a bit of a release from guilt .... we do the best we can with the circumstances we are dealt.
So what would I go back and change if I could? I felt SO guilty and incompetent because I couldn't fix everything! My stress was hard on our marriage. Well, I actually had to deal with the mess of their indecision/lack of planning/etc. I think that is where you are. It's probably going to get worse before it is over, to be honest.... you have to find a way to make it work for you. If that means telling Mom this is what is going to happen and giving no choices... if it gets too difficult you might have to move her into a facility as well ... at least there, you know they are cared for/watched/safe/fed, etc. Because she will probably have an event of some kind in due time whether it be as your Dad is still living or after.... which will bring another crisis point. You need to work, your husband needs you and you cannot move... so, at the end of the day ... you have to make things work for you. Do what that takes. If a care manager helps (which is doubtful in my opinion) that is great. If not, assisted living is in your future if not nursing home for her, I would guess. I wish you well. I know it is hard. Be easy on yourself. Hugs!
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Your job now is to make sure your mom is safe, which does not necessarily mean happy. Many people with dementia will be negative and unhappy wherever they are, and it sounds like your mom might be in that group. This situation sounds like it is a disaster waiting to happen. You say she is in the early stages of dementia and has zero coping skills. She is an insulin-dependent diabetic, is refusing needed help from friends with groceries and errands and picking up prescriptions. How long will it be before she gets herself into big trouble with the diabetes? Plus, it also seems that too much responsibility is being put on her friends. And your post makes it clear how much stress you are under as a long distance caregiver. Bite the bullet and work on another living arrangement for her, either near you or in her town. Check out the assisted living facilities, find one that you like, and work on a plan to get the move done. Their staff and posters here will have a lot of suggestions on how to get an unwilling elder into a facility. She won't like it, but a move sounds necessary for both of you. Don't try to reason with her, she's not making good decisions now for a variety of reasons Good luck --- other posters here have managed this change, you can too.0
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Do you have POA for either of them? If you have POA for mom and she has a diagnosis or her doctor has said she can't handle her own affairs, you will be able to make the changes necessary to keep her safe whether she likes it or not. If not, you will need an attorney and do those steps first. Otherwise you may have to wait for a crisis to intervene. Dementia can magnify challenging personality issues, and also literally make the brain unable to see its deficits. It's not denial, the brain is just too damaged to see it has a problem. Dementia can wipe out executive function, judgement, decision making, and filters when one communicates. She likely has no idea how ridiculous and hurtful she is being. If it were me in your shoes, I would look for a geriatric care manager in her area to quarterback some of this temporarily. They can be the eyes and ears on the ground, manage some of the care coming and going. But honestly if you can't be local then mom probably needs to move to a facility. That's the only way to make sure her diabetes gets managed, she is safe 24/7, and someone will handle whatever crisis come up. Many of us have had to do this against our LO's will. We use therapeutic fibs, distraction, and patience. Again, the legal and medical aspects must be in place to make that happen. A geriatric care manager may be able to provide guidance through this process and help select a good facility and make the move happen.0
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Thank you all for your replies. To answer a couple questions: when I went back initially, earlier in the year, I sought the help of a elder law attorney, as the cost for dad's care was going to be exorbitantly expensive. At that time, I was given POA over mom and have medical proxy. So that piece is done. It took 5 months and just this month, he was approved for medicaid. Mom has some money but not enough for long term assisted living-that would be out of pocket, not covered by medicaid. I'm not sure how that would work- him just being approved for medicaid and she goes into AL.
The other piece is that she says she would move out here with us (doubtful of this) WHEN something happens to dad, meaning after he dies. I can see her point, she doesn't want to leave him behind all alone and I don't either and to move him at this point is very complicated with his dementia, he is incontinent, etc. So that means her only option is to go into AL there.
She is a very stubborn woman, not just because of the oncoming dementia. She has always been this way. When I was there earlier this year, she fought me verbally taking her to the doctor all the way until we got into the car and then she had no choice. Same with doing something simple like going to the bank. She fought me verbally the whole way, blaming me and what I was forcing her to do and that I came there and "cooked up" things. In reality I was helping her get the financial issues in order so dad could stay in the nursing home.
What's hardest is that I feel I am in this alone. My brother also lives as far away from her as I do. He does not help at all. He listens and asks questions but he is as fearful and stubborn a person as she is. He has not visited our parents in 11-12 years. He doesn't think they are as bad off as the nursing home, doctors or I say as he hasn't seen their decline. Mom's sister tries to help, she also lives 3000 miles away and she is getting older herself and is not able to do much except listen to me.
I just pray daily and try to make the best decisions I can.
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I agree...you are doing a good job....there is only so much one can do
I would add that I would have a chat with your mother's Dr. Dementia maybe but my money would be that she has some serious depression. I bet the Dr can prescribe something that will help her with that. Worth a try.
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Hi mountainloon,
Trust me - most us know exactly what you are going through. The names have been changed to protect the survivors, but as we were reading, the bobble heads were going. You don't want to be the heavy, and so you accept the guilt and heartache. I'm not going to tell you what to do - but Stop That! You're the best thing they ever did together! It is now your turn to do all of the things they may not like, but you know is for their own good. Just like they did in raising you. Dad is set - great. One down. Your brother; he's not going to help, and so you need to stop getting angry with him for not helping with 'our mother'. His guilt tells him you got it under control. And quiet as it's kept, he only takes your calls because guilt makes him listen. Truthfully, he would rather not have to fake interest. Do both of you a favor, let both of you off the Guilt hook; otherwise, you'll resent him more and more every time you speak to him. Take updates and calls to him off your plate, you have enough people who won't help.
Now Mom. You have left Wanna-Be-The-Good-Daughters-ville, trying to make her happy is over; from this point on, you need to move to the city of Mom-Safety-My-Sanity. Do what you need to do to get her where you need her to be. We didn't like 'because I said so!' growing up, but it was what they felt was best. It's your turn to tough love like that, doing what YOU know is best. Put your big girl panties on and use the Power in that Power of Attorney. That is why it is called POWER of Attorney, not What Should I Do of Attorney. It's POA, not IDK. And no hiding behind 'but you don't know how my mother can get'. Oh yes, we do! (Can I get an Amen from the choir?) You can't shock any of us with how abusive, critical, mean, meaner, meanest, nasty, nastier, nastiest, negative your mother can be - in alphabetical order with a lot of letters missing. Let me put you in good company - get in line behind every one of us who have had to take control of our parents affairs. It's a wrestling match and they don't fight fair. (when its time for your kids to do it, you're not going down without a fight either.) This ain't no popularity contest. Distance will be a blessing, you don't want to be near her while you do this. And you will have to limit the calls you take from her; decide, once a day, for 15-30 minutes, because the verbal abuse is going to be off the hook! Tell her who is coming for what, and don't back down. And yes, you will get guilty because you know she is confused and angry, even hurt - but that is more the reason why you need to be the one to stand strong, take control and restore order. Work diligently with her doctor, believe me, they will be more supportive of your decision than you think her diagnosis calls for, and the facilities. Do this from your house - you have everything you need - phone, computer, and distance! If you have to get Medicaid to pay for her facility, get on it, doggone it! What can she do - beat you up? Tell friends and family how horrible you are? You think she hasn't already? They know what's going on; they are so glad it's you - not them.
mountainloon, I know this sounds harsh, but I use this tone because it is probably going to be one of the hardest, painful things you will do. Your self care is primary - equip your mind, body, and spirit with prayer, counseling with a doctor or friends kitchen table, and sense of humor; stay in support, but do the hard work, and take heart in knowing - you only have to do it once!
Luv and prayers for you and for mom...
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Mountainloon,
I just want to say I feel for you. There are a lot of similarities between your situation and mine.
I live about 800 miles from my parents who are in their late 70s. They visited me more than twice since I grew up, but not a lot and it has been almost 10 years since either of them spent a night away from their own home. I also have a brother who lives far from them and doesn't really do much to help.
My dad has mid-stage FTD, and has injured himself a couple of times but only minor, so no hospitalizations yet. I would not be surprised if that ends up the way he ends up going into memory care though. It took more than a year to convince my mom to have him diagnosed and to get their wills, power of attorney, health care proxy, etc. done, and then more scenes after that to convince her he had to stop driving.
Like you, I have a lot more stress about my mom. She hasn't been diagnosed with anything and in fact hasn't seen a dr in probably 30+ years. She's always had a lot of anxiety and hangups. Like maybe agoraphobia and control freak issues. My guess is that she does not have any dementia, but the situation with my dad is straining her already poor coping mechanisms and mental health. She now also has what I assume is arthritis and can't walk well. I worry she could fall and break something and then it would be a crisis who would take care of my dad. I have the numbers of some home heath aide places near them plus the facilities that would likely be best for my dad.
I have tried to convince her that they should move closer to me but they say it is out of the question. She also refuses to have an aide come in, though they do have a person who helps with the property and sometimes will change a lightbulb or hook up a new device for them. I have this person's phone number and also the neighbor across the street. I have more hope an aide may one day be possible.
I visit them every few months and talk to her almost every day. She will tell me about that day's challenges with him, and mostly she will reject my suggestions. A few times lately she says she will try one.
I also work full time and my husband does not. I am handling my parents' finances as well.
I also feel guilty, but I have been working on that. I recommend live group support (they have Zoom groups too), and DBT principles. You have recognized the patterns and the effect they have on you, which is the first step. Now mindfulness, radical acceptance (of what is and I can't change) distress tolerance, and increasing interpersonal effectiveness can help. That would mean "oh she's doing X again, that really pushes my buttons" then coping techniques for yourself and figuring out how to best manage her and the situation. Like logic doesn't work.
And I agree with the previous advice about just getting on with it, and steel yourself for the negativity. And take care of yourself. Be kind to yourself, and remember most likely one day your mom and dad will be gone, but you and your husband and daughter will still be here.
Take care, and let us know how it goes.
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There's a twist to my situation. My mom is living with a friend who has manipulated her into thinking all family members are poison. Mom says she's happy there but she doesn't sound happy. She does not want to leave the city she has spent 27 years in despite the fact that the only person she now sees is 'the friend'.
I am first in line on the POA and her friend is right after me, but I can't execute it because it specifically states 2 doctors have to give the diagnosis that she is incapable of managing her affairs. I've contacted her doctor without any luck, even written 2 letters.
While she is being bullied, large amounts of money are magically leaking from her trust account. When I ask her she either pretends she doesn't know, or she really doesn't. I can't tell anymore what is true and what isn't.
I recently opened an case with APS but I don't have any idea how long that will take or if anything will come of it. Because the right to dignity if someone doesn't want to go there isn't much that can be done.
I'm not complaining, in fact mom could come live with me and I'd be happy to have her. And as hard as it is not to hate 'the friend' I can't figure out why someone would do these things.
Does anyone have any suggestions?
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Tell the Dr about the money.
Read the POA and do whatever is allowed to stop the money flow. You may need to consult with a certified Elder Law professional.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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