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03-22-2015, 03:28 PM
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Wow Kelt. I feel for you. There is a LOT on your plate!!!! I'm guessing you are alone in this and that is not good. If you have no siblings, or at least none that will help, you are not alone. My brother passed a few years ago and this left me alone to care for my mom. I have since moved in with her because it made it way easier to care for her than from afar. But, i get that most people don't have that option. We, thankfully, lived less than a mile from each other so it was an easy option for me. I wonder if you have (and please forgive me if this is redundant or too invasive) reached out to others...as in ...does their insurance company have Case Managers, Social Workers...do they qualify for Home Health and so on. There is a huge amount of help out there, problem is most people don't know where to look for it. Another problem is people may think they don't qualify for it, but almost all qualify for some. I am a Registered Nurse and Case Manager and work with the elderly on a daily basis. Please reach out to someone, and feel free to reach out to me if you want to, you gotta get some help. And again, you may have already done this but you should not be facing this along. No one should. Please know i am posting this with empathy and compassion. In the mean time, i'll remember you in my prayers and send you white light and positive energy. We all have these "things" to deal with. The secret in walking the easiest and BEST path, is knowing our options....
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03-22-2015, 05:20 PM
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***Trigger Warning - Topics of emotional abuse, violence, and healing are below***
I was my mom's wild child. I am her youngest and the only one she raised until a teenager (this part is an super long story). I came back home when I was 28 and my son was four years old. I had no intention of sticking around that long. Well, 12 years later, here I sit. I have been to sole caretaker of my mother for the last four years. I have a brother (12 years older) and a sister (seven years older). Neither of which could take the time to come over and hang out with my mom, so I could take care of me. Neither of them seemed to care about what was happening with my mom. I would contact my brother, who only lives three miles from us, every time we ended up in the hospital. The response I often encountered was that it was my fault because I wasn't taking good enough care of her. He would yell at me and tear me apart. I endured this because he was her son, and I didn't want him to leave her, too. My sister left us ten years ago because of me, or so my mom says. It seems that a lot of it is my fault, but I have done everything I could do that she would allow me to do. I tried to get her in home physical therapy, which she would kick out the physical therapist and never do any of the exercises. I tried to get a nurse to come over and be with her, so I could go just have a minute to breath. She would kick the nurse out, too, and I often found myself walking the people downstairs and apologizing profusely. She would yell at me that I don't need any time for me because she didn't take the time when she was raising me. I can only understand the frustration and fear my mom felt in marginal ways, but I tried to connect with her. I tried to make things better for her. She has been in and out of nursing homes and the hospital, but this last jaunt into the hospital and the nursing home broke me. She has a history of leaving without doctor's consent, so when she called me two weeks ago to come and get her, I told her no. It broke my heart, and I sit here and cry now because of what has resulted from that one two lettered word. It was then that everything of the last fours years, honestly my whole life, came tumbling down out of my head and heart into my mouth. It was in those few minutes that everything I could never voice because I couldn't ever admit to myself was true. She threatened me through intimidation, "You better come get me." I still said no. She threatened me through guilt, "If you don't come get me, I'll call your brother!" I told her to go ahead and do that. Then she started to cry, "You don't love me." I said that I did and that is why I am saying no because I cannot take care of her the way she needs and that was me showing her that I loved her. She got angry again and told me that she was moving out. I said that is fine and that all of her things will be packed before she could get here. She hung up on me. I think I started to grieve then. I think in those quick moments I realized I just lost my mom because I figured it all out. I was the adult child of an emotional abuser, and I made the conscious choice to no longer be that child. I lost my will and desire to take care of her. I lost the guilt and shame of not being enough. She called back later and tried to negotiate. She suggested that I move my son out of his room, so she could be in there. Before, she was in the living room. I laughed. I asked her who on earth asks their child to put them above his or her own child? She again got angry and hung up. It got to the point that I didn't want to answer my phone when she was calling. I felt like a horrible daughter and human being. Two Fridays ago, I packed all of her things and she came with my brother and his wife to get them. It did not go well. My brother got violent with me and my son stepped in to defend me. My mom told me it was my fault that he put his hand on me. It has been over a week since she has been gone. I have thoroughly cleaned the house, blessed it, but I still cry. I have missed worked and I keep looking for someone to tell me that I have been wrong in all of this because that is what my old tapes tell me I should be hearing. I wish I missed her. I feel bad for not feeling bad enough. I feel like a dick because I know that my life will better without all of the drama and heartache.
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03-22-2015, 11:44 PM
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#3 |
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It's really good to have this thread here. Princessbelle, you are right I am doing everything myself, I don't have any family to help as an only child. Part of the weirdness is that my parents don't seem like family to me either. They pushed me away long ago as unacceptable. They are old people I know who have no one else. The phone call I got from my mother about this stroke was the first time she's called me in twenty-six years. I have seen them every few years and spoken briefly on the phone with them (my instigation) every few months, I don't really know why. My father has always been psychologically abusive to both my mother and me. I got out, and have always felt protective of her even though she chose to not interact with me lest it upset him.
It's a long complicated story that is probably just like a hundred others, so the details don't matter that much. I do need to hire others but right now in this initial period of what I have learned is the "Medicare 100" first days, it feels like I don't have time to find the right people to hire. I know it will work out in the long run, but it's crunch time. I think what I am doing would be classed as geriatric manager of some sort. My father also has cancer (he was taken off his coumadin (warfarin) for surgery and that's what stroked him out) so I am trying to set up a transition to Medicare hospice + gap insurance to cover medical expenses when the 100 days are over. Room and board will be self pay at around $9k per month. I am taking time for myself, that's part of my one on; two off schedule. I'll burn out quick if I don't. I am taking food with me so that I will eat healthy and so will my mother by example and the fact she doesn't want to cook. I do the best I can to get sleep and have no plans to move anywhere. The weeks that I am home I am planning and working on this but at least I can concentrate and take breaks in the flow. I will make sure they are both safe and comfortable and that their assets are protected. I came to realize a few years ago that with my father there would never be a reconciliation, nor a cathartic clash of titans, as it had been in my head for so long. It was deflating and also hurt but I got over it. I am now coming to realize that there will never be a hallmark relationship with my mother in the aftermath of his death. That is kind of sinking in now along with the fact that she simply doesn't care. It's too late, the woman I thought I knew so many years ago isn't really in there anymore. I've offered my mother everything from occasional part time to full time live in help and she says it would be too invasive. Yet she seems amenable to looking at assisted living or an "independent-retirement" apartment with supplemental help. Go figure. I know she is in a strange place emotionally where she can't quite grieve her husband of 60 years because technically he isn't dead. I've suggested support groups for either caregivers or widows (to be?). She has been cut off and isolated for a long time, and hearing loss isn't helping. She is timid and well trained to not think of herself. I know she can't live alone and the reason I took her to a Dr for dementia evaluation was so that I could figure out if I should get her something in regular assisted living or if I should get her into something that could provide memory care. They seem to be divided and I don't want to set her up to be in a place where she might make friends only to have it taken away because that place may not "do" memory problems. I also understand that there are medications that can help if it's caught early. For now I only leave her for two weeks and make sure she has a full tank of gas, food, and a bunch of cash if she needs anything. There isn't much else I can do other than work as fast as I can to get her in a better situation and my next trip over I am setting appointments for just that. Oy vey. Ramble, ramble. I guess that's what this thread is for. If anyone actually made it through this, congratulations! You have a longer attention span than I do, I've written this down over three sessions, lol. Here's your prize.  
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03-23-2015, 09:10 AM
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#4 |
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Kelt, I would suggest that you talk to those at the Assisted Living Place to see if your mother can actually function there with medications and if she cannot, will she have to move to a different facility? I live in an all adult retirement and disabled community for seniors, as I am young but disabled I am allowed to live here and it helps me afford a place to live. I had some problems with an elderly person and her dementia while living here and it became a nightmare for me to deal with. They ended up forcing the family to do something about it and moved her out because it started to cause problems with my own peace and tranquility the more the woman's disease progressed. I know it affects people differently, but I would suggest you speak to the Assisted Living Place before just placing her there. They may not be equipped to handle someone in her condition should her condition deteriorate more. I know there is medication she can take that may help, but is she willing to take it EVERYDAY? is the issue as well. The woman where I live wouldn't and she became aggressive and agitated more and more everyday, driving me nuts til they made her move out to a nursing home equipped to deal with her. It's not only your mom that you need to consider about where she lives, but others that may have to deal with her daily as well. Just something for you to think about.
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03-23-2015, 09:53 AM
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For most of my adult life i took care of my folks financial and government paperwork, because one day they just looked at me and said " we don't get this anymore".
My mom fell one Christmas eve and broke her hip in the CVS parking lot, which required surgery and extensive rehab which required more decisions and every day visits and feeding my step-father. Then, my step-father became ill with kidney disease and heart disease...i took him to alll of his appointments including the appointments to put in his shunt for dialysis...then he had a massive heart attack, and my mom was forced to terminate life support. My mom also had kidney disease which she told no one about, because if you don't think about it, it will all go away...until she wound up in the hospital with an emergncy shunt in her neck, and dialysis three times a week. All of this occured as i began to become ill, and wound up with a triple by-pass! We began converting my mom's garage into a suite (she had a two bedroom house and we have a daughter) for my wife and i, and we moved in to care for my mom, who had quickly begun to go downhill...during all of this, my loving wife took care of both of us, got us moved, and began to work from home. My sister, ah my sister. I think during the last 2 years of my Mom's life, my sister watched Mom for ONE DAY, and took her to dialysis ONE TIME when i had the flu. When she was in the hospital, full of fluid in her lungs and barely breathing (every couple of weeks) she took reports over the phone, and visited kind of hit and miss. Having a sibling certainly does not guarantee that you get support...something that was hard for me to take. I worked full-time during all of this...my wife changed her schedule to work from home to make sure my Mom was safe and cared for...you know who suffered through all of this? My daughter! I had no time for my daughter, and for several years she was the one who got short changed the most. I would gadly do it all again if it meant i had my mother back...but i have to say that was the most stress i have ever endured. Do the best you can to take it one day at a time...and to just stop and breathe once in awhile. |
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03-23-2015, 10:45 AM
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Alzheimer medication helps my mom. If we had the funds I would have put her in a memory care home early. The best ones have so many stimulating activities and start at the low end of care to the end of the disease. There are many of them now. Starting early could make a difference.
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03-23-2015, 03:07 PM
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Here are a few places that may be a help for those of us taking care of our parents and need a place to start.
As i said earlier, sometimes it's just knowing who to reach out to... First, Office of aging. I didn't put up a link because you need to look in your city/county. So, type that in first then the words office of aging. They have tons of resources available and most are free. They even have catalogs of free or nearly free help in your local area, from low cost dentist to sitters to help for hearing impaired. This is the "go to" place for financial assistance as well. Including meals on wheels (for meals delivered to the home daily), food stamps, etc. Check into their insurance. If they have a supplemental insurance plan such as Humana or Blue Cross or Mutual of Omaha or any of those, give them a call and tell them the situation. Ask them for help. Sometimes they have case workers, social workers, doctors, nurses that can come to the rescue and even come to the house, monthly, weekly to assist with the care. SSI directly in your town...call and set up a meeting. Take all of their earned income for the previous year and see what they qualify for. Sometimes, you may be surprised...pleasantly. If your loved one is home bound, they could qualify for home care...talk to their doctor. Do they need help with medication compliance, therapy, ect. And if so, you can usually get assistance with bathing. Again, they must be home bound and this is usually short term. Need help with cost of medication for your parents? Check out this site... http://www.needymeds.org/index.htm Type in the name of a medication and it will bring up a list of places to apply for low cost and often free medications. You will have to show proof of income, etc. But, it's worth it. I'll post more later. There is help out there. Hang in there everyone..we are all in this together.
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09-28-2015, 05:57 PM
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But now it was the best decision I made,to look after me,I'm new here,but I think the threads here are so real,so thank you everyone for your honesty and openness.
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09-28-2015, 06:51 PM
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OK enough for today of my mom. I wanted to strangle her today because she wasn't paying attention to the cardiologist telling her NO SODIUM OR SALT in her food anymore and Then after seeing him, I took her to a pretty darn good and local bbq place because she hadn't had any in a very long time. She was just griping about everything. OMG,That is when I was about to lose my cool. I had to walk out after eating and take myself out by the car and just light up a smoke. She stresses the hell out of me and I hate it, then I want to strangle myself because I can't seem to manage my stress level around her and she aggravates my ptsd so badly. I'm still tight and stressed and just got home, so I'm going to try and relax now because Tomorrow I have to take her BACK to the Cardiologist in the afternoon for an ECHO on her heart. He also took her off of 1 of her blood pressure medicines named amlodipene (sp?) because it can cause swelling and then wants to see her after the ECHO is done but 2 weeks later. I'm trying to be the good daughter and caring daughter I was raised to be but it's taking it's toll on me to do it. She honestly grates my last nerve of the day at times. And THAT makes me so upset with her and myself. OK that's enough of my ranting. sorry.
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10-28-2015, 05:24 PM
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Costs for Dementia Care Far Exceeding Other Diseases, Study Finds
This. Just hired two assistants for mother this week, fortunately she doesn't need much right now. The writing is on the wall though, this will only get more expensive, never less than it is now. Medicare doesn't cover sh*t for this because it isn't "medical". 
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10-28-2015, 07:41 PM
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I started caring for family members when I was 18 years old. A month after my 19th birthday, my grandma lost her battle with lung cancer. After I graduated from high school, my dad was diagnosed with heart problems. I took care of him until I was 28 years old, when he passed away from heart and respiratory failure. Nearly thirteen years later, I still have an issue with his death. It has caused me to suffer from depression and anxiety.
Zimmeh
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10-28-2015, 07:57 PM
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an insightful link:
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| caregiver, stress |
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- touring two more nursing homes to make sure my father is in the best : finding more clothes for him and learning how to use the heat press in laundry for labeling : having my ass pleasantly kissed by a "wealth management" firm that is doing literally nothing for us (at $55k per year in fees just to be on 'standby') and assessing whether or not I'm up for this challenge myself : straight back over to the nursing home to work with PT on customizing a wheelchair : whisking mother to her Dr appointment where she forgot where she was or why only to have the Dr say she's fine to live by herself based on a questionnaire 
: off to the accountant to sign papers that aren't ready : discovering the park brake on her car decided to seize in the parking lot >> REAALLY?? : get that towed and another car : to head back to the nursing home to learn about swallowing issues in stroke patients from the speech therapist : back to mothers house to put together a tv because hers has been broken for a month only to have her tell me she won't watch it even though she just asked me to "fix" (replace) it that morning. 
hates me for being gone.
Hybrid Mode
