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Caring for you parents.... Just clearing my head here....

rhawk

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I am just using the form to clear my head. It actually helps me to post because I see what feelings I am having and I ponder over what I am saying. It may be a long post and I do not expect anyone to read it all, but if you do, thanks. Just know it helps me to put it out in front of me and it helps me clear my head when I am feeling stressed and frustrated.

My mother is just 1 ½ months shy of being 89. Her memory is far from perfect, but neither is she suffering from dementia or Alzheimer’s. I view it as simply the normal and expected memory decline that many seniors get. She has advanced COPD and is stubborn. She is functional and does live in her own home. She lives in New Jersey and I live in Montana. I travel out to visit and help with what I can a minimum of 4 times a year. I have 2 sisters, one who lives fairly close to mom and the other is in Virginia. I am in my mid 50’s now and my sisters are a decade and that plus 3 years older than me. Mom is not the easiest person to get along with and my sisters seem to get the brunt of the problems. I somehow manage to avoid the fights, but I have seen a share of them.

My sister in Virginia rarely comes up, and if/when she does it seems to be more of a “family” visit, meaning she runs off for the day to be with my other sister or see some tourist area. I admit that mom and she will fight, but it does bother me greatly that I cannot rely on her to come out and help mom. She always wants me to tell her when I am going out to see mom so she can plan a trip then, and I intentionally do not tell her when I get the tickets. I feel that it would be best if she would come out on her own a few times a year when I am not here, to add greater coverage at moms.

My sister who lives near mom tries to see her a few times a week and I know that she gets a lot of “poop” from mom. Mom and she fight a lot and some of the fights will be bad enough that my mother refuses to see or talk to my sister for long periods. Over my life I can remember some of those times exceeding a year! Now mom is mad at her again and it makes it harder for me because I come out more often and try to help from afar. And I really do not enjoy the flying and time it takes to get to NJ. We have only a regional airport and I have to take multiple flights, plus it is 10 to 15 hours door to door (my home to her home and or the other way). But I digress, so now mom won’t talk to my sister again and I am now in New Jersey on a week trip trying to help care for mom.

Mom forgets to take her medications all the time and when I give them to her, she does not like taking the meds. She hates not being able to breath and other issues, but getting her to take the steps to help the issues is like trying to get a 2 year old to eat spinach or broccoli. This morning I got her to allow me to contact some eldercare places to see about having someone come over for 2 hours a day to make her lunch, clean her dishes, fold laundry and give her medications. Trying to strike while the iron is hot (and because I fly home in 2 days) I went to the company this morning to talk to them. It is hard and I feel uncomfortable because I have to explain my mother’s attitude and how she thinks and try not to offend. Being 89 I am not going to try to change her, so I need to make sure that someone who will come will be someone she will accept and not fire (which she has done plenty of times in the past). *sigh* So they will be stopping by her home today at 4 for a meeting with the person who will come around daily and the account manager. I have no idea how that will go yet, I am praying mom remains receptive and tie up the loose ends and set this up tonight or tomorrow, because I am gone after. Mean time I will continue to try to get mom to allow my sister back in the house, because that is going to be key sine she is the one person near and who can come out at a moments notice.

Getting old is not pleasant. I watched my mom’s mother get alzhiemer’s, end up in a horrible nursing home who cared so poorly for her she had to get her leg amputated… I watched my father get dementia and also die with no mind in a veteran’s home… I watched my father’s mother break her hip and lose the ability to walk and die of a massive heart attack…. I watched my father’s dad go though a slow mental decline (never totally losing his mind) and get colon cancer at 98. I do not look forward to my future I suppose. I never got married, have no children (I was always afraid I would not be a good father, like my dad, so I made it a point to avoid that just in case) and so if I end up in a bad decline, I’ll have no one to care for me. That does bother me now. How great it would be if I could go back in time to meet with myself at 20 and explain a lot to myself. ;) I probably would not have been very receptive to my own advice though.

I bought a lot of “TV dinner” trays and on my trip here last month and on this trip have made over 45 dinner for mom. She cannot figure out a microwave oven and so the easiest way to give her dinners was to make them and load up the “TV dinner” trays with the portion sizes I know she will eat, and put directions on each one on how to make them. I used to just make loads of food and freeze it, but my mother just will not throw out old food. I will find long expired stuff in the cabinets and refrigerator and throw them out, and of course she gets mad and does not want me to, so I am forced to do it after she goes to bed. I threw out mayonnaise yesterday that was opened and expired in 2013! That is something I’ll have to make sure a person who will come to her home daily can do. I do not understand why she is doing that now. The mother who raised me would be appalled at my current mother’s behavior with food. I know it. So for now she has bunches of dinners and her freezer is packed and there is no room for anything else now.

Ahh, I manager all her bills, or at least try to. I took her to a dentist today as she had a appointment and found she owed them money from last month. So I have them my billing information and now they will send me the bills and I’ll handle them like I do all her other bills. At least that will help when I try to locate all her medical bills next tax season. For many years I have to make a special trip to see her and spend days scouring her bank statements to locate information I need.

No, I am not complaining about doing this stuff, just letting off some pressure. Ultimately I am happy to do what I can, she is my mother and who, what and why I am is owed to both her and my father. It is just that sometimes you can feel overwhelmed. As I said at the start, running my disjoined thoughts this way allows me to ponder as I type, pause and think over issues and to relieve some steam. It is more therapeutic for me at times I can use it. So if you stayed with my ramblings this far I thank you. If you are someone who is struggling to help or fully care for their parents, then I offer you my prayers and tell you “Thank you for what you also do”. One day they will no longer be with you and know that you cannot go back. Love what you have now and know that one day you will see them again.


David
 

Kristen.NewCreation

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I'm glad you posted. Being a caregiver isn't easy. and trying to coordinate from a long distance is even more difficult.

I was going to suggest contacting some help, such as an Area 7 Aging organization, but sounds like you already did. I don't know about her state, but in some cases there are medicaid waivers available that will cover more care than some agencies provide. Here where I live, they can set up housekeeping, nursing, and aide services for showers/bathing, etc. Medicaid waivers pay for all of that as well as incontinence supplies and other necessities.

Do your sisters have any support groups, particularly the one taking on the most care? There are some places that offer support groups for caregivers to help with self care and burnout.

I'm glad you felt comfortable to vent. Just knowing that you can get it out sometimes can be a wonderful stress reliever. Glad you're here!
 
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rhawk

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I'm glad you posted. Being a caregiver isn't easy. and trying to coordinate from a long distance is even more difficult.

I was going to suggest contacting some help, such as an Area 7 Aging organization, but sounds like you already did. I don't know about her state, but in some cases there are medicaid waivers available that will cover more care than some agencies provide. Here where I live, they can set up housekeeping, nursing, and aide services for showers/bathing, etc. Medicaid waivers pay for all of that as well as incontinence supplies and other necessities.

Do your sisters have any support groups, particularly the one taking on the most care? There are some places that offer support groups for caregivers to help with self care and burnout.

I'm glad you felt comfortable to vent. Just knowing that you can get it out sometimes can be a wonderful stress reliever. Glad you're here!
Hi Kristin,

Yes, getting someone to come in here each day was being done today, but then tonight mom had a tantrum and demanded I not have anyone come here. Long evening and night, but the end result is that she will not allow it now. This tends to be one of the issues with my mother. I love her to death, but she sometimes seems a bit unstable manic. *Sigh* So I was trying to walk the tight rope between trying to convince her to accept the help and not having her try to kick me out of the house. (Lucky that has only happened 1 time in the last 10 years, and it was horrible as I had to get a taxi, reschedule my flights to that day and get home)

So tomorrow I will have to just be pleasant and make sure she takes all her medications and try again to convince her to allow someone to come for 1 or 2 hours a day. What kills me is that her refusal to do this (this is the 4th or so time this has happened) and refusal to take all her meds and refusal to wear the life alert I pay for will lead to her getting hurt or ill will one day end with her being forced to be in to assisted living for worse a full nursing home.

I leave Thursday morning for my long day of 3 flights home and at this point (6 days here) I am already worn out from all this. For now I’ll just have to adjust my daily call to her from home to check up on her and see how she is doing, to 4 times a day as reminder calls for the meds (morning, noon, evening, bedtime) and make sure she is taking them. I’ll have to hope and pray that she is honest about taking them because in the past she claims she does and when I come here I find drawers filled with the full bottles. :(

Your question on my sisters…. The one who lives here is a psychologist and often is at a loss on handling mom. Today I tried to use some of her techniques (ideas) on talking to her through the issues and it ended up with my mother insisting I am in “cahoots” with my sister and how dare I favor my sister over my mother. *groan*

How I release steam is talking to people or writing it out, but I thought that I could use the board here to do the writing and see if it helps AND gets some feedback from time to time. :)

Thanks for your insights and suggestions and allowing me to burn off a little of the excess frustrations.

Sincerely,

David
 
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rhawk

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Just more head clearing. LOTS has happened since I created this thread 11 months ago. Just the latest thing...

My mother will be 90 in May. She has COPD, cognitive issues, early dementia, often has paranoia… She lives on her own and we (her children) have tried for a long time to get her to accept in-home care and she won’t. She called 911 last week because she was having trouble breathing and was taken to the hospital of course. The kept her overnight and she began to get aggressive and paranoid the next evening and was then held for psychiatric evaluation.

Skipping all the details at the hospital these last 5 days…. It just really takes the wind out of your soul and requires a lot of strength, watching a parent go down like this in the waning years of their lives.

*sigh*

I have no wife or children of my own. No one really to care for (or try to) me if/when I get like my father was or my mom is, in the next 10, 20, 30 years. I suppose IF my mind goes, the good thing will be my mind IS gone, and I won't know, understand or care about what is happening to me. But right NOW I do and do not look forward to my drive down that sad and lonely highway.
 
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rhawk

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Well it is worse now. She has managed to get the doctor to continue to hold her and they want in house psychiatric care now. I just booked a flight out there and leave in 2 days.
 
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I'm praying for you to have patience and strength while you help your mom, and I pray that God gives her some moments of clarity and the willingness to accept help. I really hope she will allow an aide to come to her house daily.

My husband's grandmother also had COPD, and she lived with my in-laws as her health declined. I came over three days a week to help care for her and be a companion. It was definitely challenging at times, especially when she became angry all of a sudden.

You're a very considerate son to help your mom as you have been doing. Sending prayers that this trip is more successful.
 
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rhawk

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I'm praying for you to have patience and strength while you help your mom, and I pray that God gives her some moments of clarity and the willingness to accept help. I really hope she will allow an aide to come to her house daily.

My husband's grandmother also had COPD, and she lived with my in-laws as her health declined. I came over three days a week to help care for her and be a companion. It was definitely challenging at times, especially when she became angry all of a sudden.

You're a very considerate son to help your mom as you have been doing. Sending prayers that this trip is more successful.
I am sorry about your husband's grandmother (your grandmother-n-law?).
I am still here and not having a good time. I really think this is the defining event that is showing us we need to look at a nursing home or full time in home care. I have been with her each day here and she forgets I am out here and is surprised to see me. Today about 2 or 3 hours after I left she called and wanted to know why I left her and forgot to bring her home. I was at her house doing work (my employer let me come out BUT I have to put in some time, I have several projects that MUST be completed) and it was about 5:30pm and all I had was a banana about 10am and was wanting to eat, but opted to drive back out there to stay with her for about 3 more hours. I got back to her house and started laundry and it all just hit me suddenly I was broke down. This is not going to be easy and knowing the likely outcome of a nursing home id breaking my heart right now.

In the morning I have to go to the hospital to get records and information and talk to the social worker and run errands to her bank for statement copies so I can finish up her taxes (I wrapped up 95% of it Saturday night and Sunday night), then I am heading to see mom and meet with her doctor in the late morning. I missed mass on Sunday, so I'll go to a church near the hospital that has a 7:30am mass tomorrow.

I leave here Friday and I know it won't be resolved by then. I will look to see if it is possible to return in about 20 to 30 days.
 
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rhawk

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The behavior sounds like my mom over the last 10 years. I would have a lot of stories that were close to yours. Her agitation and angry/accusatory moods/personalities can flip on a dime and he has no recollection of the events when she was like that.
I left the nursing home (where she is in for PT for 2 weeks) about an hour ago as she is in that state now and my being there is pointless as it only serves to make it worse. So I came back to her house to eat and get work done.
 
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rhawk

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What are some of your ways to calm the anger...other than leave?
Leaving (the property or room) is really my stand-by. Assuming the behavior is about the same, there is NO convincing her of the error of her belief. Several years ago on a trip here I cleaned the sink and garbage disposal and under the sink. In the cabinet under I found the stopper for the disposal side of the sink. It must have been there for years and not used. I put it in the sink area and noted that it looks rather gross (not filthy, but sitting unused for so long the rubber was coming apart, like melting) and I was going to buy a new one later that afternoon. Mom used the sink and saw it and grabbed it and the rotting/melting rubber got on her hands and she went wild! Accusing me or "slathering tar all over the sink so that she would get it all over her hands" and such. After an hour I just went into the living room, told her to please leave me alone and I ignored her for the rest of the day. Not much else I can do but avoid the storm and ride it our in a safe haven. Her delusions are real to her, and I have tried to learn to accept that, as painful as it may be. It would be like trying to convince me that something I can see, touch and smell is not really there. It IS to me, period.
It is not intentional, her mind is not working right.

But how I wish it were not so.

My mother was aggressive and upset this afternoon in the home. I stayed 3 hours, sitting and not bothering her and let her fall asleep. But I was there for her, for what she REALLY needs, not what her delusions tell her I need to do. Then I left and came back to her house to do work and after a few hours I went back and was there 4 more hours. She was actually the happy/pleasant mother on the return trip. Had she not been and was the other personality, I would have still been there 4 hours watching her, just not interacting with her.

Now that we will HAVE to either put her in a home OR have someone living with her to watch her 24/7, and I truly believe the likelihood of her being around after the next 8 to 18 months are slim to none, I have decided I will now travel out here monthly for my visits. After all, she is my mother, nuts, delusional, dementia or paranoid, I love her, she gave birth to me and raised me. I at least owe her for that. And I believe in my heart that it is the right think to do.
 
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rhawk

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Hi rhawk,
Mom says the heat makes a woo woo loud sound. Wants someone
to fix it.
On the off chance that she hears a low or high frequency better than you, have someone come in and check it all. At worst case there is nothing wrong, but you can have the repair guy tell your mom that the "woo woo" sound means it is working and it is good she noticed and had him check. That MAY help.

I also drive her attention elsewhere when I can. For example, she remembers the TV shows MASH, Bob Newhart, Mary Tyler Moore and Barney Miller and loves them, so if she is driving me nuts when I am there, I'll check for one of those shows being on TV and put it on and show her. That gets her to watch it, and often that helps calm her some, at least while the show is on. ;)
 
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I am back home, for now. Mom is still in a tp nursing home for about a week more. She is now diabetic and needs insulin daily. Her mood has improved a lot and she has been nice for almost a week. Her memory is still bad and her copd is still advanced of course. I think the mood change is related to stabilizing her meds, blood sugar and taking her OFF antidepressants.
needing insulin at 90 and not being someone who takes her pills, I am not thinking she can vo home alone again. This is going to be hard, getting her to accept a nursing home now, she never wanted to ever be in one. I may have to fly back out in a week or two.
 
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rhawk

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I am returning from an 8 day trap out again. The hospital has informed the state that mom requires 24/7 care, so we are trying to set that up now, less adult protective services grab her and place her in a state run home.
We have managed to stabilize her on the meds she is on now, and she has been calm and pleasant for close to 3 weeks not. I started the processes of declaring guardianship on HER and her property/money. This will enable us to prevent her from kicking the aide out and I will continue managing her finances as I have done for 12 years. But it is a painful process and I found myself in tears a lot the last few days, and I have not slept a wink or even went to bed in 2 days. I am ragged right now and my nerves are raw.
Augmenting the stress of trying to get legal guardianship and get home care for mom, I went to the doctor the day before I flew out and decided to have a blood test. I have neglected myself in that I have not had one or a physical in 6 or so years. My glucose was through the roof, at 2 points from 300 and my A1C shows it is a long ongoing problem, so 3 hours before I boarded the flight I find out I am now a diabetic. My doctor was concerned on the numbers and since my brother-in-law is a doc, they had a pow-wow on the phone when I arrived and decided to put me on meds and make me learn to test my glucose within 2 hours of being in NJ. I have to meet with a diabetes specialist and a lifestyle person (for food?) when the workweek starts. Mean time I am afraid to eat anything but lettuce, raw veggies, tea and water. I am STARVING, worried about my mother, concerned over myself and with the attorney's starting the filing for guardianship I feel like I am stabbing my mother in the back. Yes, I realize logically I am doing the right thing, but emotionally is a whole different ball game. I just want to get home now (I am between flights right now) and cry and sleep and cry some more. Then I have to get ready to come back out for the court case. :(
 
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