
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
I do not wish to be a burden to my kids, I am not narcissistic,
but I hope that if I do not want to go, I won't have to go, into a nursing home.
I worked in one, my grandmother with dementia was in the same one, at different times. The first thing they did with her was dope her up, within three months, she couldn't distinguish herself from the wheel chair they tied her into, with a posie? and they left her in it, day after day after day, until three years later they broke her hip and she died from complications. Something I would not wish on anyone.
The woman I take care of is 86 and has long term care insurance, but it does not cover dementia, at least not the middle stages, that might be something to check for, It is kind of like a homeowner's policy, that doesn't cover flood damage.
Going into a assisted living is different, if it is one that looks like an apartment, but she was in a one room, where she didn't know how to navigate, the space. It was one of those modern ones, looked quite glamorous, from the TV commercials, butit was huge and was not navigatible by someone with middle dementia
and if you can not navigate on your own, does not mean that someone, will assist you to the crackling fireplace to have an early evening snack with other clients or gathering to the fun stuff or that you can participate in the fun stuff.
Some people think the assisted living is all about programs, does not mean anything, if you have dementia. Hopefully, no one will get this horrific disease, it is quite devastating to watch, but we are better prepared these days.
I hope that by keeping her in a loving environment, that we can stave off the disease. She has made wonderful improvements, gained ten pounds and now that she is seeing her friends again, is not doing the drifting staring thing, but is still engaged in life. Something that would and was not happening at the assisted living. February 11, is only one week, good Luck!
I completely agree with you that the story I related about my niece, was very scary.
I learned much about looking out for others, especially, since I became the little mother in our family. This is the reason I didn't have my own children.
My mother has exhibited some very negligent and stupid behavior when it comes to the care, and responsibility of the people she needed to do this for.
When I was five years old, and in kindergarten, I remember walking to and from school with a little boy in my classroom and with his grandfather. It was not a far walk to the school, but for a kid of my age, it was. Mom had to have been home at that time, taking care of my sister, and two younger brothers, since I'm the eldest.
I remember very distinctly, that my mom would wait for me to walk from the end of the cross street more than half of our block to our house. On one day as I did this, I was being chased by a huge great dane that was loose in the neighborhood. All my mom did, was watch me from a distance, screaming in fear of this dog right behind me. She did nothing to my aid. When I got to where she was, in our front yard, she was laughing at me.
Boy oh boy, what do they call these, epiphany moments?????? I was crying and of course very upset, as she did say something like, "you poor thing," but since she found it so amusing, believe me, "I totally got it, that day," even if I was only five years old. The message I got from that, was I couldn't rely much on mother for moral support. Gee, I couldn't even count on her in terms of keeping me from possible harm either. This in a nutshell has been in the background of much of the little relationship I had with mother over the years.
I know you've told us about the fact that your sister is supposed to be handling some of the legal aspects regarding your mom's situation, when the powers that be kick in.
What does she think it will be like then? O.K., Sharynmarie, again I hope your sister starts to feel better, and hopefully start to realize, that although she may feel hurt and all of that, which I know that's a normal response. But given your mom's condition, you are going to need all the cooperation from her that you need. But I feel for you especially in this regards. This is exactly what I go through with my own sister, who is the one calling all the shots w/mom. Hang in there!
Much Love & Light, Margeaux
Sorry, last paragraph: cooperation from her that you can get, I haven't had my Joe yet. Margeaux
I don't know if some of you remember I'd posted some time ago, about this wonderful cat, named Vanilla. My husband was given Vanilla 21 years ago.
Since my husband travels a lot, he would be gone sometimes for 3 mos. at a time, so he gave the cat to the neighbor, at some point. Well, they've shared custody of the cat for all of these years. I came into the picture later on, and really loved Vanilla also. Anyway, they had to put him down yesterday, and it was awful!
But, I know he lived a long life. It was interesting, because on Friday, I somehow had this strong feeling that possibly the cat may not be alive a week later. Then, he spent the night at our apt., this last Sunday, as he did so many times, when our neighbor was away.
Vanilla sat on our coffee table, and just kept looking at my husband, then he would look at me. It was as if he was trying to say something to us, and I really noticed that. I was so sad, yesterday! Well, may his beautiful spirit soar very high,
Margeaux
I feel bad for my sister because she has no one to vent to but me. I have had a year on this site to work out a lot of my anger and to learn from other's experiences. Her dr. put her on Zoloft for depression, I hope it helps her. I can't help but think her anger is her way of grieving. I told her that holding on to all that anger is only going to make her feel worse. She said she knows that in her head, but her heart won't forgive or let it go. I remember struggling with all those emotions when I was in therapy. The hard part with her is reaching her by phone. I send her emails now and don't call her on weekends. The DPOA is written that if she is not available for whatever reason, it falls to me. As far as our mom's medical care goes, I will continue to be the one who handles most of that which is what I have been doing over the last 10 years whenever something comes up. I tell my sister after the fact since I am here. She will have all the finances to deal with and have to report to mom's attorney and then give yearly reports to the court.
Go drink your cuppa joe and enjoy! I have a lot of running around to do with mom this morning. Hugs to you and enjoy this sun shiny day!!
Back in Jan. sis took mom to make homeowners insurance payment, went to the wrong office but they were associated so they forwarded the payment. Mom got confused because it was not the office she was familiar with so she has continued to be concerned that she didn't pay. I went to the right office a week later to get a copy of the payment to give to mom which she lost. The woman in the office told me that my sister never cancelled my mom's car insurance when she took the car. They were concerned since sis was not covered under mom's policy to drive the car plus mom was owed a rebate as the coverage should have been cancelled when sis changed names on ownership. She told me they were holding off on billing my mom because on Dec. 28 2012 it technically rolled over. They were basically cutting my mom slack due to the situation with Alz. I told sis about this asap. She assured me she would get it cancelled. You guessed it...it didn't get cancelled until Jan. 28, 2013. I took mom down to the office today to get another copy for her so she could see the homeowners was paid thru 8/13. The woman told me that the insurance on the car was cancelled but too late. So now my mom is going to have to pay $56.82 for one month of coverage plus losing the rebate. She has had since October to take care of this. I am waiting for Sonja (mom's insurance woman) to call me back. I am going to ask her to send me a copy of anything she sends to my sister. I am trying really hard not to over react on this because I know my sister was sick in January when I informed her about this. Really, is that how she is going to handle my mom's finances?? I will stop my rant now in case I have to eat my words later...but REALLY...golden girl of the family????
margeaux - so sorry about vanilla - he sounded like a lovely pet,
These stories from both of you about childhood are revealing and very sad and scary. It ends up that we feel that we are on our own from a very early age, and, in fact, we are.
alabama - I think someone outside the family is good, I am so sorry you have not been able to visit your mum on special days. and I am sorry your mum has had another fall. Hope this gets resolved soon.
mywitsend -wondering how things are. I think your son had a good insight. Mother tried to divide sig other and I at Christmas. Prayers for the move to go smoothly.
camilla - everyone's situation is different. i am sorry you have had such a bad experience with facilities. My mother is in an ALF and doing well there. We each have to make our own choices. Sounds like you are caring for this lady well despite your own problems. I don't think anything can stave off Alzheimers, but a loving environment could optimize her abilities
((((austin)))) - mother has always said she just wants my sis and I to get along, but she gets involved with games with my sis all the time . Mind you, my sis does not need any help - she is narcissistic too. I am sorry about the trouble with your brothers. It goes on and on... Glad you have sorted out things with your friend. It is not easy adjusting to some one else at this age I find. Too set in our ways.
lovingmom I so agree you should not have to give up your life entirely. Alz is a difficult disease to care for. I am glad you have decided against taking her in. Apparently, from reading here, the situation your mum is in, is not uncommon.
cmag - my mum planned for her old age too, thankfully and has managed her money well. She had to supplement my father's pension when he was in an ALF and she was working. (There was a large age difference between them, and his pension was such that she knew she had to work to provide for her old age.) The proceeds from the sale of their house was her main asset, and that has been managed well by her financial advisors over the years. Her financial advisor says she is good for another 8 years anyway and at age 100 that should be enough but who knows. She is trying to rope my sis and I in to agree to pay for some things, when she has enough to do it herself. I ignore it. If the time comes when she does not have enough we will deal with it then.
susan ((((((hugs)))))) - hope you get your fil into assisted living. You don't need the put downs, I am sorry that you have this in your home. It sounds like you work very hard to care for your fil.
fairydust - some do really not care about the effect they have on others. Sounds like she s a control freak. It becomes a power struggle.. My oldest son who is wise beyond his years sometimes, say let them have it when it comes to power struggles. Sometimes easier said than done.
Thinking of all of you - this is not easy. ♥, hugs and prayers Joan
I must apologize to everyone because I know I have been very self absorbed with my mom right now. Please know I am reading your posts and hoping and praying for all to receive an outcome that is favorable and doable for you all♥
I talked with Sonja and she of course was vague because she can't come out and say something that would jeopardize her position. She is already pushing the line just talking with me. I think the best situation is if I can convince my sister to let a CPA or the bank handle our mom's finances. It's not that I think my sister will embezzle money...but...the money issue may tear us apart because I don't agree that she let our mom lose the rebate and now has to pay $56.82. Sis should have to pay this realistically.
It is good to know that some long term care insurance does not cover dementia. Seems strange but good to know. How many people get dementia in old age? A lot,
from what I can tell.
Margeaux- so sorry about Vanilla. We had a cat who lived to 20 years. It was so sad to let her go.
SharynMarie- you have nothing to apologize for. Venting to people who offer support and don't judge is what this site is for.
Anyway - I do agree thar your sis is perhaps not the best person to be handling mum's finances, and a professional would be a good way to go. I also agree that your sis should pay the $56.82, as her negligence caused this situation, It is not the amount but rather the principle. Sis's health is not good and it looks like this is probably too much for her - as seen at work too. I hope she is not developing dementia. It is one reason I would rather some professional was POA for mother. When I get a session of FM, I am not much good for anything, I can understand you being concerned about this coming between the two of you. It all seems to be landing on you. ((((((hugs))))
lovingmom - my mother is right in the edge of needing more than an ALF. She has home care coming in 4 times a day. I have wondered what will happen when/if she slides down more. You are right there are not many places for those who fall between an ALF and an NH. Some go into senior foster homes where they get more care than an ALF or an NH from what I can tell, and are of a home environment. I think they can be a good solution. I also think you are probably right that she needs an NH or more care than an ALF can give if the dementia is progressing, I don't know what the figures are about the number or % of people who get dementia. It does seem more than before though maybe it was not diagnosed as well before. i have wondered about that too, and what causes will be found, eventually. Our family seems to have avoided it largely though my father probably had vascular dementia associated with drinking,
Mywitsend - keeping everything crossed for you and prayers going up. I know "these people" can cause trouble to the last moment and beyond. Slices of cheese and boiled water - oh my goodness. That won't feed a growing boy, or any one else! I bet your son is looking forward to mum's (as opposed to grandma's)cooking. I am sure you all are looking forward to your home returning to normal.
Even if excuses come, move her things out anyway. Let her know she doesn't have the option of staying. People like her will push the limits. My mother once came west to visit, and told me when her plane was leaving to take her back east. We arranged our day to have lots of time to get her to the airport which was close to an hours drive away. When we were getting ready to leave she looked at her ticket and said she had made a mistake and the plane left 1/2 hour earlier. Well. that wasn't going to stop me! We hopped in the car, and I drove at break neck speed (my kids call me Nana Andretti anyway) to the airport, let mother out close to where she had to check in, found a good parking spot, and got into the airport just in time to see her disappearing through the gates. All she had to say was "It is lucky the police didn't catch you speeding," Aaaargh!!! Too many of these kind of incidents...
Take care all - Margeaux -thinking of you and Vanilla. Losing a pet is hard. sharyn, I wait for the next episode in your drama - you too Mywitsend You both are right in the middle of it.
((((((((hugs)))))) Joan
We or our grand daughter (2 1/2) could step on them. She could pick one of them up, thinking it was candy or even one of our pets.
I am quite aware that dementia patients require consistency and change is difficult, but we had to move them all upstairs, to his room ans ask him to take them there.
He had no problem when I told him why we were doing it, but wouldn't you know it, as soon as it was dinner time, he went upstairs and brought them down (everything) to take his blood sugar, insulin and pills! OMGolly!
I just don't know how much more I can take, but I'm really stuck between a rock and a hard spot!
I called a well renowned Elder Care here in the Atlanta area to ask for advice and an appointment.
I told them hat my doctor had diagnosed me with depression, my hubby suffered from manic depression and was 70% disabled, that cared for my grand daughter during the day and also took care of her mother, since she was still undergoing surgeries from her cancer and double mastectomy, that my mother (divorced from my father), but lives in the house because hers burnt down and she had no where to go. She suffers from rapid cycling bipolar disorder with a personality disorder and took care of her from afar.
I needed to know how I could place my father in a nursing home because that is what the doctor is suggesting and maintain caring for my mother in his home and not lose the house to the state once he passed away.
Georgia is an estate recovery state. I was told the only way I could do this was to purchase the home for at least 2/3 of the appraised value.
I am so bummed. I cannot afford the home without totally depleting my emergency fund and withdrawing all of my fathers annuity, that I hoped to take care of the old house with if something happened while my mother still lived there.
I was told the case was cut and dry and that was the way it was, nothing they could do to help and no since in even bothering to take my case.
I have no one else to turn to and nothing more that I can do.
We may go ahead and take the $$ out of the annuity/IRA based on his 100% disability and at least pay for a few weeks of respite and get away for a while.
My mother cannot live with me and know one else will allow her to live with either due to her horrible attitude and negativity. I know she's sick, but she believes she is just fine and everyone else is out to get her; oh yes, she suffers from paranoia too. She has nothing to her name, but the automobile we gave her several years ago and the rest of her SS goes through hands like water, and scratch offs. It's all part of the disability.
I would cry, but it wouldn't do any good and I've done enough of that.
I'm mentally exhausted, so I'll just bid everyone a good evening and call it an early night.
Saying my serenity prayer, brush my teeth, take my pills and go to sleep.
Wishing all of you well and hoping your tomorrow is filled with love, peace and lots of sunshine.
Suzanne
Stay tuned for the continuing drama of MyWitsEnd and the conclusions to the drama of Sharynmarie, Lol!!! I love the idea of a soap opera because if it was a fictional life drama instead of my life, how funny would that be!! Thank you Joan as always!! Take care of your health, I really appreciate you commenting when you have your own health to deal with. Hugs!!!
I find myself both angered and depressed by some of the stories that I read on various threads.
My marriage looks like its not going to survive this. I took my daughter to a family constellation session on Monday, for us to try and get perspective on how we can get through this, and sat and watched her crying her eyes out for 2 hours, because of how things are at home. I have tears in my eyes just writing this.
I come home, and FIL has been complaining about us again, the result of which being that husband takes FIL's side, which pushes me to mother lion mode trying to protect my kids. Hubby says my kids are selfish and intolerant and lacking compassion. If he could just see how his dad treats us...
Yesterday I asked FIL if he would do this to his other son and his wife to which he replied no, absolutely not. I was so angry I nearly hit him. He then takes himself off to hubby, complaining that I have kicked him out the house (not yet, but by God it is close) and he can't live with me like this, and hubby needs to make decisions please about his wife and family if he wants him to continue living there
So, long story short, Godawful fight last night, sleeping in separate rooms, and no speaking this morning. Tried to talk to FIL this morning, and he says: I will not talk to you and the kids I am not interested in anything you have to say, and starts to walk away. I said to him, you do realise you have broken this marriage almost irreparably don't you, how do you feel about that, to which he replied that it makes him happy.
happy?
How do I even begin to get over this? My husband is not speaking to me, my kids are distraught to the point of sobbing in front of strangers, I am so angry that I want to smack the man back to where he came from.
Sorry for venting, and also for being self absorbed in my own chaos, which probably is so small compared to everyone elses lives. I think I need to also serve the melted cheese and hot water tonight and call it supper :-) margeaux, I am sorry about your cat. :-(
You are correct that at some point, we just can't handle it all anymore, but in this case, I have no other options.
As I stated, I will go ahead and send the required documentation to take the small annuity he has and use it for some respite and to help pay for his medications and bills. By doing this, my mother will be able to remain in the house and the estate remains in tact.
We'll just have to get up each day and see what our "new normal" every day. He has been doing down hill slowly ever since he moved in with us a year and a half ago. He's been hospitalized 4 times; 2 times he required a lengthy rehab stay after being dismissed from the hospital. The first time was for colon cancer and the placement of a permanent colostomy and the second time he went in with double pneumonia and wound up in congestive heart failure. I'm quite certain it won't be much longer before he winds up in the hospital again for something and we will just have to look at theses times and rehab as our time of respite, allowing someone else to look after his care.
S.
If I ruffle anyone's feathers, it is not my intention, as I personally know, care giving or taking, is very time consuming job and can fray a persons nerves. I do not want it to continue to fray mine, which is how I came to this website, I feel better
knowing there are people in similar situations like me, so I do not feel isolated.
To the person who lost their pet cat,sharing in your grief, pets offer relief and ask for us just to love them, they always love us, it is so sad...
I hope everyone gets what ends they are searching for and the patience to make it through... and as far as I know, we all have unique situations, no one has a corner on the market for suffering, giving up or helping out, I wish everyone well...
My 86 year old (1st generation) went to the senior luncheon, which meets the first Tuesday of the month, she recognized all of her friends and they were so happy to see her. After the selling of her house against her will, and the unavailability to reach her by phone, her old friends thought she had passed.
They celebrated Fasching, a European Mardigra's, they all had so much fun.
There was a an eighty something that sported a union suit, with a two piece bikini, for the festivities, it was humorous and endearing, they had such a ball. I hope when i am that age that it will be me, having a blast, that is if I get there.
I wrote my husband and my FIL a long letter and sent it via email, so that my FIL can see that I have told my husband everything. I am carrying my voice recorder around with me today and make a very big show of turning it on when he walks into the room. I have told him that we are now going to start videorecording how he treats me, and I will send it to his other son and my husband, so they can see how he behaves when no-one else is around.
I do feel for my husband, I am so aware that he is in such a tight space, and that he is damned if he does, damned if he doesn't. Last night I nearly flipped when he started sounding exactly like his dad, with his negative comments to me about the kids and my behaviour, and for the first time thought whether I wanted to grow old with this man if he had the potential to be so like his dad.
Such a minefield of issues this living with an elderly parent isn't it. All the things we think we have dealt with and overcome get pushed to exploding point when living with them. I am reminded of what an eastern Guru once said to his disciples... if you think you are enlightened, go and spend a month living with your parents. If you are still calm after a month, then maybe yes, you are enlightened.
If the Gurus consider this the ultimate test, then wow, .... no wonder its so stressful!