Continuing from the previous post (#70): My hope and plan is to try to keep my Mom in her very good Assisted Living facility for her lifetime, which I expect to be at least another 4 - 6 years, based on her family's longevity. There are a couple of benefits that could be useful to readers. 1) NJ homeowners who are over 65 and who have no more than about $79K in gross income can benefit from a Real Estate Tax Freeze (this is different from the NJ Real Estate Tax Rebate program for seniors). I didn't know about this and seems nobody in Mom's town does but I discovered it online. The tax collectors office did not know of this. If the senior meets the few criteria, the RE Taxes will be frozen at the point that you first apply as long as you continue to apply year by year. My Dad applied in 1996. Had I known, my mother's RE Taxes would have been about 60% of what she had been paying these last six years. 2) Elderly veterans who need assistance meeting their expenses (I believe that these are medical or caregiving expenses but take a look online for the particulars) can receive as much as $2000 per month from the VA. The processing time takes at least 6 months (by directive it must not take longer for the VA to acknowledge a claim). Call the number listed online for expert information regarding how to apply for your elder's particular circumstances. Be pushy about describing those circumstances, because you might have to file one application, or as many as five applications, plus two statements (notorized), plus a copy of the trust, plus a copy of the deed to the house (as I must). WIDOWS AND WIDOWERS of veterans also can qualify for similar support, but this is more limited -- around $1000 per month. I think many people are unaware of these benefits and I wonder what else is out there.
I am grateful to read these comments. I will direct anybody who is clueless about the reality of what it means to be a caregiver to disabled, elderly, or sick adults to read some posts from this collection. My story has some of the flavor of each of the other posts in it, so I will skip many details and highlight the differences. I have been through six years of careing for my Mother since my Dad died and also some time being of help to my Dad when he was ailing. During the last five years, Mom required round-the-clock care, originally provided by a team of caregivers with me covering the alternate Sundays and holidays, as well as handling medical problems, housing issues, maintenance contracts, and all things financial. I have POA, Trusteeship, Executor status, Heath Directive proxy, and am lucky to have agreement from the "heirs" to do whatever is necessary for Mom, fiancially, medically, and otherwise. I have no fear there. I left my job to take up the care of Mom three years ago because I saw her condition declining rapidly even though she had good and well-paid care, and the regular attention of a team of MDs and visiting nurses. I left work to care for her because I could not continue with my extreme hours at my job (85 - 114 per week over the previous two years), and handling the routine and also the very wacky things that went on like Mom calling 911 to report that the caregivers were slapping her and men who were living in the basement where stealing her furniture and selling it (don't ask). I got to know the local police very well. There were only so many times that I could go without the meager sleep that I did get, and I became sicker and sicker myself. So, I left my job, dismissed the caregivers, observed Mom closely for a couple of days and discovered that most of her problems were of her own making and could be turned around. I did succeed in turning around her health within 12 weeks (apparently I am some kind of genius if I can see things that other people, even her doctors missed). Reason returned, weight slowly came off, depression abated, aches and pains resolved, old cronic conditions disappeared, but other issues (incontinence for instance) required constant attention beside all the food prep, managing medication and medical visits, purchasing supplies, laudering bales of bedding and clothes, "creative financing," attempts to raise her depressed spirits, etc, all while I became sicker and sicker from the greuling 20-hour days. You really need the patient's cooperation in his/her own healthy practices to be able to mange the job of caregiving. Now I understand why her caregivers quit a couple of times. The effort required on the part of the caregiver is enourmous. Add depression, lack of cooperation, constant complaint and criticism, and the time will come when you have to give up and save yourself. I provided care out of love for three years before it broke me, but gave up when Mom was so combative that she refused even to eat, and then to drink. This resulted in a trip to the hospital for IV fluids, and then to rehab, and finally to an excellent, high-service assisted living facility that she previously refused to enter. I am now scrambling to pay for her expenses and mine while I pay for required repairs on her small house prior to selling it. I had assets, I have fewer now and I must go back to work. I am 62 years old. My mother will be 90 this year. I have an engineering degree and good genes which make me appear a decade younger than my age; these should help me land a job even in this economy that will at least cover my current expenses. The debts I incurred caring for Mom will be cleared when I sell my own house. I am of two minds regarding leaving my job. I don't think I am really cut out as a natural caregiver. I approached this with love and as a mental and physical health challenge and succeeded there, but at what a struggle. Where the heck did the last six years go? My Mom's depression has been a lifelong issue and I had been called upon several times because "your Mom won't get out of bed." I did my bit each time, and got her into therapy and meds but she didn't make progress due to her attitude that the world must be the way she wants it to be. I like reality and found this gulf between our personalities the hardest to deal with. I am lost. But Mom is being taken care of by an army of well-trained caregivers and I assist them where they need it, like understanding when Mom is sabotaging her own heatlh by her insistance that reailty be the way she would like it to be. They are beginning to understand the mechanism. It took several months but we are there now. I will write another shorter post about the business end of all of this which will definitely help some people who need to find extra funds or benefits for their family members under care.
In February 2012, I got laid off from my job. In March, my then 92-year-old mother fell backwards in the dining room at our home, suffering a compression fracture in her back. Much pain required heavy pain medications and constant monitoring even with a part-time caregiver. I was unable to look for another job for two and one-half months, so I took Paid Family Leave from my last job. Mom has recovered very well by now but is still slow walking and uses her walker to help get around. Some helpful medications are still used. I have no other relatives available for help, so I assist with meals and transporation for Mom. We cannot afford to further my job training for office work in accounting, so I will consider part-time work as an office clerk or a concessions cashier. Mom needs my help, and concurrently, I need some income. With only her income now, we cannot afford caregivers. I have been unemployed for about one year and only 57 years old and uninsured; too young for medicare, so I must be careful to stay well! Prayers are needed for both of us!!
Just wanted to say that I think it's great to have all these different opinions and experiences discussed on this subject. Wish I had this kind of information 5 years ago. This will help many people find the right answers to help them make the decision that best suits their situation!
jumping into this kind of late, but here's my 2 cents: regarding jessiebelle's comment (''Few relatives realize yet that there is rarely such a thing as inheritance anymore.'') Oh, that one's true! When Mom was still in her house, a couple of relatives were always very helpful to her, did all kinds of stuff for her when asked, even painted her kitchen, living room, dining room and laid a new floor (which she did NOT ask for and didn't really want.) Anyway... one time while she was in the hospital, they went through her drawers at home and read her papers, finding out they were not named in her will. Then they stopped being helpful. Hurt feelings? Or just mad they wouldn't be getting anything? Fast forward five years -- Mom is still alive and now officially penniless. I could sure use their help now and again, but none is coming ... BTW, I would not quit my job over my mom. I feel I'm more useful making money that I can use to help her out.
Seabiscuit, WOW!!! What a story! I'm sure glad you finally got POA. There may not be anything left for you, but at least you will get to avenge your Mom's mistreatment by her family. She is lucky to have you on her side. Hope all goes well for you both. CB,There are so many of us with the same story as you. Nothing left but at least we can live with ourselves!
While I do not regret that I quit work to care for my mother - who had Alzheimer's disease - it does anger me still that I had to do this. I had joined a wonderful Alzheimer's caregiver listserv support group and learned so much. However, my oldest sister had POA, thought she knew everything but knew very little, and would not listen to anything I said. I finally realized the only way I could ensure my mom had care appropriate for a person with dementia (because my sister said in no uncertain terms that she did not care if a caregiver she would hire knew anything about Alzheimer's), would be if I stopped working a moved in with my mother. I lived with my mom (in a retirement complex!) from 2002 until 2008 but kept working until January 2003 when I saw Mother really should not be alone. (My sister would never have hired a caregiver until some horrible catastrophe opened her eyes to the fact that our mother could no longer live by herself.
Didn't mean to rant. This subject always opens an old wound. But - hey - taking care of my mom WAS a good experience and I met so many wonderful people in her building, too. I could not find a job after she died in November 2008, so I went back to school! So while I am still angry at my sister for her "my way or the highway" attitude, I do not at all regret what I did.
my mom wouldn't give me power of attorney right away, her addiction to a 37 year old grandson, with 3 of his own illigetimate children from 3 different girl friends who has never worked a day in his life, is illiterate and living off his grandmother's assets, free room and board, a million dollar home with a million dollar view, 5 years free rent all bills paid, 1800 dollars a month "allowance" and HE did not give his kids, 11, 6, and 2, one dollar of support in those 5 years. I had to evict him so we can get rent and pay for me now, cause I take care of her; I had to quit my job because she wouldn't make me POA and I ended up quiting, retiring early to stay in Yuma with her, and no one else has offered to help in over a year - no family member sees or contacts her but me. I quit my job. I had to. she wouldn't give me power of attorney. It was my last year, 20 years, full retirement with full benefits. Had to withdraw in cash, to pay the grandson's charges on the grandmom's cards - oh my - oh my....the entire inheritance is going to the IRS and liens from creditors now, in a blaze of financial destruction, smoke and ash; meanwhile the IRS is calling and the "kid" won't get out, much less support and care for his own. Marithe, Girbaud, Francois - designer label clothes - this kid was way too entitled to be bothered with learning to read or write. 37 and never had a job in his life, cause no one ever gave him any discipline. and now, he's a monster who calls grandmommy daily to extort her for an endless supply of money. He screams at an 88 year old woman in the twilight of her days who shouldn't have to care or worry about other people's self-made uneccesary problems. But instead she is abused and tormented by her grandson who can't fend for himself after 37 years???!!!! and both her daughters, all demanding money before her last breath; she's being blocked from coming back to her own home. She wants to go home but daughter and grandson have made it clear that grandmother has already given the house to them, and they want squatters rights. Also, if she tries to take the home back - they will call 911 and have her removed from the property until they can contest the eviction. Family - that's your deadliest enemy - especially if you're in one that is all sociopaths save for myself. - at 60, I've lost everything, my pension, my inheritance (the house is willed to me alone in my mom's inheritance) the "kid" has bankrupted my mother (stole 100,000) so the home he is squatting in will soon be a liquidated asset on the IRS Auction block. We've lost everything to a treacherous family member who hovered around my mother's pension while the rest of us got up every day and went to work. Born in 1977, he flunked freshman year 3 times in a row, and to this day can't read or write - WTF is happening to "kids" today??!! I didn't have any, for this very reason. WOW - 88 year old woman can't get a moment's peace at the dinner table or in bed at 2am in the morning without that brat calling her and screaming at her. Well I have POA now. I cut him off. I'll see him in court. He has an eviction notice, restraining order and I'm suing him for stealing from the estate.
When his step-father died, neither he nor his mother called 911. the father told my sister he was going to leave her, she was telling him she was going to take him for everything, the "boy" 24 at the time, was saying: "I wish you were dead already". The father had just had a triple bipass 3 weeks earlier and now under duress he went into stroke and a 50 year old woman with a masters in diabetic management (my mother is diabetic, and she has never taken care of her) and a 24 year old "man" stood by and didn't call 911. an hour later the fater died in the doctor's office and the next day my sister was 600,000 dollars richer. And now they want my mother's house!
she bought paid in full that house all by herself and her kids are now trying to steal it! wow!
Quiting a job to care for a parent in this economy should never be considered unless financially feasible. With more people aging there must be more affordable solutions for their care. Today's adult children need to consider their own financial future or the same pattern will continue generation after generation. Society can only be sustained by financially stable people being in the workforce.
Can you expand on the caregivers contract. I have never heard of this. What are the terms and how do you arrange for something like this? This sounds like it could be extremely helpful information. Thank you
Marlene, take my word for it! Getting a lawyer to draw up a contract was the right thing to do. We all deserve $$ for our time and devotion. Unfortunately there are a lot of us caring for parents that have no retirement or enough income to even get by. So being paid is not an option for many. You are so lucky and your sibs should be thankful for you as they could be the ones doing the caring. I have 6 sibs with my oldest sister being 10 hours away and the rest living less than an hour down to 2 minutes away. I don't see most of them very often. My oldest sister calls and sends $$ to help pay for Mom's supplies. My youngest brother calls to check in and will come if I need hem and he buys Mom's night time diapers for her. The others maybe stop by 3 or 4 times a year now and never call to check up on how Mom is doing. I have had to take her to the ER a few times and don't even bother to let them know. They get angry when they find out, but I just tell them too bad! When I don't hear from them or see them for months at a time, I figure they are not interested in Mom at all. I have been out of work for 5 years now with Mom and so far in the hole financially that I may need to get something part time while she is in daycare. I will be able to collect SS in August and that will be a huge help! In the meantime, I just keep on plugging like everyone else. Mom has PD and advanced dementia so she is in a wheelchair and needs total care. Can't even hold a conversation with her for the past year, but she still enjoys TV, eating when you can get her to open her mouth, and being outside when the weather gets better. It was 5 degrees here this morning!
This is a huge issue. Usually it is women who quit, and we are the ones who are most vulnerable to the financial impact of this decision. I am sorry I didn't take leave, rather than finding a job transfer to a job I could not stand, with coworkers who drove me nuts. Well, not nuts, but into a depression!
I relocated to wisconsin 10 months ago from california to take care of my parents. I was very fortunate to spend one whole month with my mom before she passed away. My dad has alzheimers. I went to an elderly law attorney and she drew up a caregivers contract between me and my dad, and I get paid for 20 hrs a week. My brothers and sisters do not pick up my dad and spend any quality time with him because they are to upset with me that i am being paid as a caregiver. I regret this situation has happened to my family, but I am enjoying my dad all over again.
dk- unfortunately, the only way to get to Catalina is by a very tough ferry ride that takes about 2 1/2 hrs. That would be after the 2 hr drive to Long Beach. Then, once you get to Catalina, there aren't any cars. They only have golf carts, bicycles or walking to get around, except for the buses that take you around the island. Getting from the pier to a hotel would be almost impossible for Mom, as would getting to any restaurant. A few years ago she could have still done it, but not now. Mow she can't stand for 5 minutes without severe pain, and anything that bounces her is excruciating. I take the speed bumps here in our complex at about 2 mph. I really wish they'd take them out. Mom's had a 4 level fusion, and has had a spinal cord stimulator implanted to help with the pain. She gets shots in the epidural sac every couple months, and has had the nerve endings burned to stop the transmission of pain signals. Still horrible pain. She also suffers with GERD to the point that her esophagus is almost closed. Many years ago, in a procedure to try to open it, they perforated it and she almost died. Now they're very careful about doing that procedure on her again, so therefore she has to get so can't choke any food down before they do anything about it, and then you have to yell and scream at them first. She's about at that point now. She's been able to keep anything down today except one Ensure. She won't even try a jello.
Palm Springs is beautiful!! I have been there a few times back in the 90's, when my terroritory was from Sacremento to San Diego. I had the pleasure of driving from Los Angeles to Palm Springs in the summer heat. I was probably the only fool in a convertible with the top down and the air conditioner on.
Sorry the movie was a bit long for your mom. My mom has issues too sometimes with things. If my mom is not engaged, she will go to sleep in her wheelchair. We took her to a beach on the cruise we went on last year to watch the great grandchildren in the water. It was not interesting enough so she fell asleep and woke up with a suntan X on her foot, the only place we forgot sunscreen.
We try to vary mom's activities and keep her interested. Today we just did some shopping, but it got her out in the Sun. She is thrilled about the sun today because where my siblings live it was only about 7 degrees above 0 without the wind chill. So she was very excited about the sun today.
I hope your brother is ok, that is tough for the back surgeries. My husband's mom had a lot of back surgeries.
You should take your mom to Catalina, it might just be the thing to give her a good day. Last May, after our cruise we stopped to visit a friend of mine in Tampa. My friend's mother had a brain tumor that had the same effects as Alzheimer's. So we decided to take our elderly mom's to the zoo. My friend called me for days to say thank you for coming by and getting them out. It was the best day her mom had had in a very long time. In fact, she passed 4 to 6 weeks after that, but it was a good day that her mom even remembered weeks later.
Sometimes the trips we think will be the hardest will be well worth the time. Believe my siblings know that I am a force to be reckoned with, that is probably why we don't get a long so well. You know the truth hurts sometimes. :-)
dkjellander - We live in the Palm Springs, CA area - the desert east of Los Angeles. It's beautiful here with lots of palm trees and hundreds of golf courses, and we're surrounded by snow capped mountains. You can take a 15 minute tram ride up to the top of Mt. San Jacinto to get into snow, then back down to the valley floor to sunbathe by the pool.
Mom was feeling a little better today so we decided to venture out. We'd been wanting to see Les Miserables, so we went to the movies. It's a great movie, but long. I didn't think it would be hard on Mom, since she would be sitting the whole time. Apparently I was wrong. She barely made it out of the theater, and by the time we got home, wouldn't even eat anything, just headed straight for bed. She has a friend from out of town that is coming to see her tomorrow, and Mom thinks she's going to be well enough for the two of them to go out to lunch. I just don't see how that's going to be possible. Mom just turned 82. She was pretty healthy up until about 4 years ago. Then she really started going downhill. Heck, in 2005, Mom and I went to the Big Island together and hiked to the active flow of the volcano - about 4 miles round trip over uneven terrain. I thought that was pretty good for "two old broads" LOL
I just found my brother may need another back surgery, so it's kind of up in the air if he'll be coming down or not. He's already had 17 back surgeries. He gets his MRI tomorrow. Should know more next week. Poor guy has really been through the wringer.
I really wanted to take my Mom to Catalina. She was born and raised in LA, and never went there! Now she'd never make it. That, I think, will be my biggest regret. That I didn't take Mom to Catalina while she could still go. So tell your siblings where to get off and enjoy those trips!
I was out of work for a year after being laid off and ended up being my mom's full time caregiver by default. I learned during that time just how stressful being a full time caregiver can be (far more stressful than any job I have EVER had in 30+ years of working), and as a result, I jumped at the opportunity to go back to work full time. I was fortunate enough to have been able to manage financially and could probably have done so without ever going back to full time work BUT, I felt it was important for me to maintain an identity outside of just being a caregiver. I now save very little as most of my "extra" funds go to pay for caregiving help, but I have balance, a life outside the home, and an ongoing career I can turn to when my caregiving days are done. Don't underestimate the emotional toll being a full time caregiver can be, even if the financial burden is not a great concern.
It sounds like you have a lot of visitors and that is great for your mom! I am sorry she is sleeping and losing weight, it is tough to watch a parent go downhill. After how my dad passed, I was not expecting this with my mom but I believe God knows what he is doing.
It sounds like you live in the South, I lived in Naples, Florida and summer was not the time to be there.
Sadly, my mom lives in a small town and people just don't come for a visit. Her younger siblings do not travel and of course have their own health issues as well. At first we took mom around to visit everyone, but then I was given some crap about caring for her and not putting her in a home. So we said screw it and we are going to have a good time.
I think my mom has a few siblings that are jealous because their kids won't travel and take them places like we do with my mom. My parents always took us on vacations to all sorts of places. So we figure this is the least we can do and we do not worry about what others think any more, I just put on my direct hat and tell them to mind their own business.
dk- yes, I am still caring for my Mom. She suffers from severe osteoporosis, and broke her hip this past September. She has had several back surgeries and is in severe pain most of the time. Her mind is sharp most of the time, but her body is weakening and she is sleeping more and more and she is losing weight. A year ago she weighed 133, now she weighs 116. My brother is a great guy. He is retired because of disability, but he comes down from Oregon whenever he's needed. Now, I have to say that it's not difficult enticing anyone to come here and take over for awhile - we live in a tourist destination, and when people come here they have a guest "casita" they can stay in with their own tv, refrigerator, and bathroom. Our winter temperatures average about 68-75 degrees. So far this winter, my brother has come down for 2 weeks, my daughter for 2 weeks, my niece for 5 days, my brother is coming again on the 6th for another 2 weeks, then my 90 yr. old MIL will be coming for 2 weeks. This is just since Thanksgiving! In the summer it's a different story - even we try to get out of here!!!
It is broken, she has a brace on it. The doctor said she probably had some form of osteprosis that was not taken care of. The doctor said is uncommon today for people to live with broken bones because most of the time it is their hip, but he said there is no reason she can't live a long time with it just the way it is.
Her leg is broken just a couple of inches past the knee, it did seal some, but not completely. She moved wrong during the healing process and it broke some of it loose. The doctor offered her surgery, but he wasn't sure that the pins would heal in the bone. My mom said no because she did not want to be put under, she knew that I would care for her no matter how many arguments we have.
She broke it in Sept. 2011, but because of the 2 infections in the leg they couldn't even do a cast. You see cellulitis can kill you if you cover it, so she wore a leg brace. The leg brace broke and medicare only pays for one every 5 years, so the doctor told me I could use other things or she could go without. She likes the braces we are using now because it gives her a bit of support.
Thanks, I use to think I was more like my dad but I am finding that I have my mother's toughness to fight and survive to go the distance. We even travel with her in a 5th wheel and plan on doing so until she is unable to help us or in a bad way. She actually does much better when we travel. My mom and dad use to love to go on vacation or go camping on weekends. So we try to take her a cruise every year to different ports and take her around the country. She has been able to see all of her siblings even though they do not come see her. My mom was from 12 siblings, with 9 of them still living.
This year we promised to take her out of the cold to Texas for a few months, then we go back to her home, then prepare for this year's cruise to 4 new countries.
Sadly, though it is not just my siblings, but her siblings that will have regrets. I have had my share of battles over the past year or so, but like I said I will fight and I will fight for my mom. I had 2 of her sisters tell a bunch of other family members or anyone that will listen that I should put my mom in a nursing home. In fact one of those aunts has a son that tried to tell me the same thing and I politely put him in his place and he knew not to bring that subject up again. :-) I did have someone tell me that the reason my mom's leg didn't heal was because I traveled with her all the time, but I put them in their place and I just won't deal with them either.
She does real well for a lady with a broken leg, the biggest challenge is the mental state. I have told my siblings and a couple of my mom's, but she doesn't want me to share it with the rest of her siblings. She says whether or not they know will not change their attitudes in coming to see her. She has good moments and that was one of them.
Do you care for your mom still? Sometimes I forget what I read because I work online and read a lot of information. I am fortunate that my education has paid off and afforded me to work from home. Because I have to work and am not at the retiring age for at least another 10+ years.
I just know that I will have a lot of wonderful and fun memories that I am writing down. I also would like to encourage people to focus on the positive memories that you make when caregiving. My mom and I have the funniest stories from the bathroom, I know it sounds weird, but we have had our challenges in some places but also good laughs.
I am sorry this is a bit long, but it is really a different kind of story from most. The broken leg is where we begun and it is quite uncommon.
What happened with your Mom's leg? Just curious. Did they leave it broken or remove it? You seem to have a really good outlook. It's too bad your siblings are choosing to not participate in your mother's life. Later on they may very well regret the choice they made. You will not have those regrets.
My parents were married for 50 years before my parents died and we too were raised in a loving family. But for some reason as we got older everyone went their separate ways.
I lived away from my parents for over 20 years before deciding to come back and help my mom clean her home. My mom is a pack rat in a serious manner, so my husband and I were going to help out for 6 months or that was our plan.
We left mom alone for 2 days, actually less than 48 hours. My older sister was checking in on mom and taking her to breakfast to see one of her friends. When she came to pick up my mom, my mom was in pain in her leg. To this day we wonder if mom fell, but she swears she didn't. Before all was said and done, mom had cellulits and burcistis (not sure on spelling) and what they thought was a hairline fractor. They couldn't prove the fractor, but while trying to get her back on her feet she did fall and then it was broken. So that is when my caregiving began.
After 9 months of a broken leg, the doctor said it wasn't going to heal, so my caregiving became permanent. My sisters have a wide variety of excuses from their own aches and pains to things I wouldn't go into online. I get minimal amounts of assistance and they are not big, one sister will not lift a finger.
I wanted to have mom checked out for dementia recently, one didn't care one way or another, the other 2 kept saying it was just old age and her pacemaker. Well a CT scan revealed brain shrinkage and the loss of brain cells, then there was not being able to get my name right. So mom was diagnosed with full blown Alzheimer's somewhere between mild to moderate, he is not sure because she does things from all of the stages. My two sisters that didn't want to listen to me feel blindsided, but what is worse is their lack of phone calls.
So my husband and I have made a comment to try and make her last days and memories to the best of our abilities and financial means without them. It doesn't mean we keep them out of her life or anything, but we do not let their actions frustrate us a whole lot. Do I wish they were more involved, yes I do, but my husband and I are still young by alot of standards so we are doing what we need to without them.
Actually, we do our best to overcome every obstacle that comes our way. I am fortunate that I have had a few close friends that also took care of aging parents so they are my support system. If I get to feeling down, they are there for me.
You are correct jessiebette, that is what happened with my dad, he was getting everything done for him, and never saw how much work was being done by his kids. He did not want to change anything, why would he. So we stepped back and showed him how to do things for himself, for about a week, he told us he could not do everything by himself, that is when we moved him into a Assistant Living Facility, he is so happy now. But, my brother was living with him, fixing meals, being his campanion, my sister was taking him to the doctor and ordering his medical supplies and flushing his cather, and I am still paying bills, doing bookkeeping, managing rentals, etc. We all understand how much work has to be done. But, in the sake of this issue, the caregiver is doing all the work and the parent does not see this, the caregiver needs to inform the family and the parent or all the work that they are doing, if the family thinks that they are money grabbing, that person needs to move parent into there life, just for a month, they will then understand,
I agree, Jessiebelle...and the "non-caregivers" have NO CLUE how much caregiving costs a person, both financially and emotionally. They should be happy to kick in, if only to make life a little easier for both the caregiver and the receiver. It's really sad, honestly. My brother & sister have no idea how good they have it right now. @lostfamily - you hit the nail on the head with your analogy about parents having money to raise us...why should we not get paid? Didn't think of it that way!
Strange thing is that the family members who don't want to caregive think the one that does is being awful if they want money. Often the care receiver does, too. This is a very difficult subject to approach. It would be nice if the care receiver initiated the conversation, but that usually doesn't happen. So a caregiver who wants to be paid is seen as a money grubbing, inheritance stealing person. Few relatives realize yet that there is rarely such a thing as inheritance anymore.
Make a list of the work you do. Do some research and call some companies that give in-home care services, you will find out that the cost for someone to do what you do is unbelievable. I do not know what your parent income is like, or if it is trust money, but you as the caregiver should be getting a wage. Yes, you should talk to family, give them the list of work you do, the cost it have someone else do the work, even if you do not have the POA, you are doing the work, you should be paid. Talk to a tax accountant and they can tell you what steps to getting paid you can do. You may have to have your family members also talk to the accountant, yes, we help parents because it is the right thing to do, yes, they raised us and we feel that we owe them, but remember, when we grew up our parents could work and have money to take care of us. You have a right to work and take care of your parent, you need help, not family checking up on you or telling you how to do things, if they are not listening to you, get a eldercare attorney and find out your rights, you deserve to be paid.
With siblings who are twins and a brother who has an alcohol problem our days are disrupted every week. One week they show up the next week they don't the next week one is here but doesn't feed her, the next week they don't change her (for time periods ranging from 8-12 - 14 hours) and get mad when i call them out on it. As of last night we have two out of six bailing leaving 3 of us. I fight with myself over leaving my job but realistically, it's just me and i've got to be able to support myself. I have at least a year's worth of leave saved with vacation, sick leave and personal leave, and still can use FMLA, but it is frightening at times. I am the primary caregiver living with Mom. I work full time, home with Mom all day on Friday's, plus every night and every weekend and maybe one night a month i can escape for a happy hour or find myself calling in for a few hours just for some "me" time. Relationships come and go but really people, we chose as a family not to put Mom (alzheimers and other medical issues) in a nursing home, we made a joint decision to take care of her ourselves. Everybody shows us, three siblings are consistent in time, bathing, feeding, changing, and caring for Mom, the other shows up when they feel like getting here after i leave for work, and then are texting me at work saying "i have to go, can you come home". I hate the thought of quitting, it's my sanity, any suggestions? As of next week, I have to request an additional work at home day due to bailing siblings because I get mad at them for not doing a complete job. You can't just leave a parent, especially a diabetic not fed, and sitting in a dirty diaper all day long. You also have to be coherent every minute of the day, not getting up at noon or coming in off a night of partying. I am furious that this is even expected of me, and furious at the excuses and lack of interest in caring for our Mom. I forget, i live here, single at 51 and it's my job and I truly love my Mom, i do the very best i can and yes like everyone else i get tired and frustrated and lonely sometimes and i blow my stack . Any guidance on the job issue would be appreciated.
This is an interesting thing to think about. We can understand why a young mother might want to quit her job to raise young children. She can reenter the workplace when the children get older, because she will still be young enough to rebuild.
However, people who become caregivers for the elderly usually fall in the 50-70 year old group. If they are not financially well set already, quitting their jobs will jeopardize their own economic future. If they are in the 55-65 year old group, which many of us are, the implications of quitting jobs is more profound. If I understand right, Social Security is based on what we were making the 10 years before we retire. If we make nothing, we get very little.Then what is to become of us as we become elderly? Age discrimination is real and the chance of getting a good job at an advanced age is not good.
I do not think people should quit their jobs unless their futures are well set. Caregiving can put a strain on relationships, and I am not surprised when I read accounts of spouses leaving. If someone is working, IMO, they should continue to work. There are other options. One does not want to take he food away from the caregiver so the care receiver can have it when there are other ways to handle the circumstance. (Sometimes we have to pull away from emotional considerations and look at things logically.)
I know I am fortunate! My brother and I were raised by two loving parents. They were high school sweethearts who remained devoted to each other until Dad died in 2005. Mom is not difficult to live with, and Dad left her financially comfortable. Both my brother and I hope that she lives long enough to spend all her money, although that is not likely. My brother is retired himself, so it doesn't cut into his work to come visit. He has even talked about moving down to take care of Mom, which I discouraged him from doing, as all his kids and grandkids are up there, and I know how I felt when I moved away from mine. The grandchildren are only young once.
You are fortunate! I know many caregivers and their siblings have all pulled the same stunts. I hear far more horror stories about siblings not doing their part than thos that do. You should be grateful, because most are not so lucky!
1) NJ homeowners who are over 65 and who have no more than about $79K in gross income can benefit from a Real Estate Tax Freeze (this is different from the NJ Real Estate Tax Rebate program for seniors). I didn't know about this and seems nobody in Mom's town does but I discovered it online. The tax collectors office did not know of this. If the senior meets the few criteria, the RE Taxes will be frozen at the point that you first apply as long as you continue to apply year by year. My Dad applied in 1996. Had I known, my mother's RE Taxes would have been about 60% of what she had been paying these last six years.
2) Elderly veterans who need assistance meeting their expenses (I believe that these are medical or caregiving expenses but take a look online for the particulars) can receive as much as $2000 per month from the VA. The processing time takes at least 6 months (by directive it must not take longer for the VA to acknowledge a claim). Call the number listed online for expert information regarding how to apply for your elder's particular circumstances. Be pushy about describing those circumstances, because you might have to file one application, or as many as five applications, plus two statements (notorized), plus a copy of the trust, plus a copy of the deed to the house (as I must). WIDOWS AND WIDOWERS of veterans also can qualify for similar support, but this is more limited -- around $1000 per month. I think many people are unaware of these benefits and I wonder what else is out there.
PatatHome01
CB,There are so many of us with the same story as you. Nothing left but at least we can live with ourselves!
Didn't mean to rant. This subject always opens an old wound. But - hey - taking care of my mom WAS a good experience and I met so many wonderful people in her building, too. I could not find a job after she died in November 2008, so I went back to school! So while I am still angry at my sister for her "my way or the highway" attitude, I do not at all regret what I did.
Family - that's your deadliest enemy - especially if you're in one that is all sociopaths save for myself. - at 60, I've lost everything, my pension, my inheritance (the house is willed to me alone in my mom's inheritance) the "kid" has bankrupted my mother (stole 100,000) so the home he is squatting in will soon be a liquidated asset on the IRS Auction block. We've lost everything to a treacherous family member who hovered around my mother's pension while the rest of us got up every day and went to work. Born in 1977, he flunked freshman year 3 times in a row, and to this day can't read or write - WTF is happening to "kids" today??!! I didn't have any, for this very reason.
WOW - 88 year old woman can't get a moment's peace at the dinner table or in bed at 2am in the morning without that brat calling her and screaming at her.
Well I have POA now. I cut him off.
I'll see him in court. He has an eviction notice, restraining order and I'm suing him for stealing from the estate.
When his step-father died, neither he nor his mother called 911. the father told my sister he was going to leave her, she was telling him she was going to take him for everything, the "boy" 24 at the time, was saying: "I wish you were dead already". The father had just had a triple bipass 3 weeks earlier and now under duress he went into stroke and a 50 year old woman with a masters in diabetic management (my mother is diabetic, and she has never taken care of her) and a 24 year old "man" stood by and didn't call 911. an hour later the fater died in the doctor's office and the next day my sister was 600,000 dollars richer. And now they want my mother's house!
she bought paid in full that house all by herself and her kids are now trying to steal it! wow!
Can you expand on the caregivers contract. I have never heard of this.
What are the terms and how do you arrange for something like this?
This sounds like it could be extremely helpful information.
Thank you
I have been out of work for 5 years now with Mom and so far in the hole financially that I may need to get something part time while she is in daycare. I will be able to collect SS in August and that will be a huge help! In the meantime, I just keep on plugging like everyone else. Mom has PD and advanced dementia so she is in a wheelchair and needs total care. Can't even hold a conversation with her for the past year, but she still enjoys TV, eating when you can get her to open her mouth, and being outside when the weather gets better. It was 5 degrees here this morning!
Palm Springs is beautiful!! I have been there a few times back in the 90's, when my terroritory was from Sacremento to San Diego. I had the pleasure of driving from Los Angeles to Palm Springs in the summer heat. I was probably the only fool in a convertible with the top down and the air conditioner on.
Sorry the movie was a bit long for your mom. My mom has issues too sometimes with things. If my mom is not engaged, she will go to sleep in her wheelchair. We took her to a beach on the cruise we went on last year to watch the great grandchildren in the water. It was not interesting enough so she fell asleep and woke up with a suntan X on her foot, the only place we forgot sunscreen.
We try to vary mom's activities and keep her interested. Today we just did some shopping, but it got her out in the Sun. She is thrilled about the sun today because where my siblings live it was only about 7 degrees above 0 without the wind chill. So she was very excited about the sun today.
I hope your brother is ok, that is tough for the back surgeries. My husband's mom had a lot of back surgeries.
You should take your mom to Catalina, it might just be the thing to give her a good day. Last May, after our cruise we stopped to visit a friend of mine in Tampa. My friend's mother had a brain tumor that had the same effects as Alzheimer's. So we decided to take our elderly mom's to the zoo. My friend called me for days to say thank you for coming by and getting them out. It was the best day her mom had had in a very long time. In fact, she passed 4 to 6 weeks after that, but it was a good day that her mom even remembered weeks later.
Sometimes the trips we think will be the hardest will be well worth the time. Believe my siblings know that I am a force to be reckoned with, that is probably why we don't get a long so well. You know the truth hurts sometimes. :-)
Mom was feeling a little better today so we decided to venture out. We'd been wanting to see Les Miserables, so we went to the movies. It's a great movie, but long. I didn't think it would be hard on Mom, since she would be sitting the whole time. Apparently I was wrong. She barely made it out of the theater, and by the time we got home, wouldn't even eat anything, just headed straight for bed.
She has a friend from out of town that is coming to see her tomorrow, and Mom thinks she's going to be well enough for the two of them to go out to lunch. I just don't see how that's going to be possible. Mom just turned 82. She was pretty healthy up until about 4 years ago. Then she really started going downhill. Heck, in 2005, Mom and I went to the Big Island together and hiked to the active flow of the volcano - about 4 miles round trip over uneven terrain. I thought that was pretty good for "two old broads" LOL
I just found my brother may need another back surgery, so it's kind of up in the air if he'll be coming down or not. He's already had 17 back surgeries. He gets his MRI tomorrow. Should know more next week. Poor guy has really been through the wringer.
I really wanted to take my Mom to Catalina. She was born and raised in LA, and never went there! Now she'd never make it. That, I think, will be my biggest regret. That I didn't take Mom to Catalina while she could still go. So tell your siblings where to get off and enjoy those trips!
Eve
It sounds like you have a lot of visitors and that is great for your mom! I am sorry she is sleeping and losing weight, it is tough to watch a parent go downhill. After how my dad passed, I was not expecting this with my mom but I believe God knows what he is doing.
It sounds like you live in the South, I lived in Naples, Florida and summer was not the time to be there.
Sadly, my mom lives in a small town and people just don't come for a visit. Her younger siblings do not travel and of course have their own health issues as well. At first we took mom around to visit everyone, but then I was given some crap about caring for her and not putting her in a home. So we said screw it and we are going to have a good time.
I think my mom has a few siblings that are jealous because their kids won't travel and take them places like we do with my mom. My parents always took us on vacations to all sorts of places. So we figure this is the least we can do and we do not worry about what others think any more, I just put on my direct hat and tell them to mind their own business.
How old is your mom?
My brother is a great guy. He is retired because of disability, but he comes down from Oregon whenever he's needed. Now, I have to say that it's not difficult enticing anyone to come here and take over for awhile - we live in a tourist destination, and when people come here they have a guest "casita" they can stay in with their own tv, refrigerator, and bathroom. Our winter temperatures average about 68-75 degrees. So far this winter, my brother has come down for 2 weeks, my daughter for 2 weeks, my niece for 5 days, my brother is coming again on the 6th for another 2 weeks, then my 90 yr. old MIL will be coming for 2 weeks. This is just since Thanksgiving! In the summer it's a different story - even we try to get out of here!!!
It is broken, she has a brace on it. The doctor said she probably had some form of osteprosis that was not taken care of. The doctor said is uncommon today for people to live with broken bones because most of the time it is their hip, but he said there is no reason she can't live a long time with it just the way it is.
Her leg is broken just a couple of inches past the knee, it did seal some, but not completely. She moved wrong during the healing process and it broke some of it loose. The doctor offered her surgery, but he wasn't sure that the pins would heal in the bone. My mom said no because she did not want to be put under, she knew that I would care for her no matter how many arguments we have.
She broke it in Sept. 2011, but because of the 2 infections in the leg they couldn't even do a cast. You see cellulitis can kill you if you cover it, so she wore a leg brace. The leg brace broke and medicare only pays for one every 5 years, so the doctor told me I could use other things or she could go without. She likes the braces we are using now because it gives her a bit of support.
Thanks, I use to think I was more like my dad but I am finding that I have my mother's toughness to fight and survive to go the distance. We even travel with her in a 5th wheel and plan on doing so until she is unable to help us or in a bad way. She actually does much better when we travel. My mom and dad use to love to go on vacation or go camping on weekends. So we try to take her a cruise every year to different ports and take her around the country. She has been able to see all of her siblings even though they do not come see her. My mom was from 12 siblings, with 9 of them still living.
This year we promised to take her out of the cold to Texas for a few months, then we go back to her home, then prepare for this year's cruise to 4 new countries.
Sadly, though it is not just my siblings, but her siblings that will have regrets. I have had my share of battles over the past year or so, but like I said I will fight and I will fight for my mom. I had 2 of her sisters tell a bunch of other family members or anyone that will listen that I should put my mom in a nursing home. In fact one of those aunts has a son that tried to tell me the same thing and I politely put him in his place and he knew not to bring that subject up again. :-) I did have someone tell me that the reason my mom's leg didn't heal was because I traveled with her all the time, but I put them in their place and I just won't deal with them either.
She does real well for a lady with a broken leg, the biggest challenge is the mental state. I have told my siblings and a couple of my mom's, but she doesn't want me to share it with the rest of her siblings. She says whether or not they know will not change their attitudes in coming to see her. She has good moments and that was one of them.
Do you care for your mom still? Sometimes I forget what I read because I work online and read a lot of information. I am fortunate that my education has paid off and afforded me to work from home. Because I have to work and am not at the retiring age for at least another 10+ years.
I just know that I will have a lot of wonderful and fun memories that I am writing down. I also would like to encourage people to focus on the positive memories that you make when caregiving. My mom and I have the funniest stories from the bathroom, I know it sounds weird, but we have had our challenges in some places but also good laughs.
I am sorry this is a bit long, but it is really a different kind of story from most. The broken leg is where we begun and it is quite uncommon.
You seem to have a really good outlook. It's too bad your siblings are choosing to not participate in your mother's life. Later on they may very well regret the choice they made. You will not have those regrets.
My parents were married for 50 years before my parents died and we too were raised in a loving family. But for some reason as we got older everyone went their separate ways.
I lived away from my parents for over 20 years before deciding to come back and help my mom clean her home. My mom is a pack rat in a serious manner, so my husband and I were going to help out for 6 months or that was our plan.
We left mom alone for 2 days, actually less than 48 hours. My older sister was checking in on mom and taking her to breakfast to see one of her friends. When she came to pick up my mom, my mom was in pain in her leg. To this day we wonder if mom fell, but she swears she didn't. Before all was said and done, mom had cellulits and burcistis (not sure on spelling) and what they thought was a hairline fractor. They couldn't prove the fractor, but while trying to get her back on her feet she did fall and then it was broken. So that is when my caregiving began.
After 9 months of a broken leg, the doctor said it wasn't going to heal, so my caregiving became permanent. My sisters have a wide variety of excuses from their own aches and pains to things I wouldn't go into online. I get minimal amounts of assistance and they are not big, one sister will not lift a finger.
I wanted to have mom checked out for dementia recently, one didn't care one way or another, the other 2 kept saying it was just old age and her pacemaker. Well a CT scan revealed brain shrinkage and the loss of brain cells, then there was not being able to get my name right. So mom was diagnosed with full blown Alzheimer's somewhere between mild to moderate, he is not sure because she does things from all of the stages. My two sisters that didn't want to listen to me feel blindsided, but what is worse is their lack of phone calls.
So my husband and I have made a comment to try and make her last days and memories to the best of our abilities and financial means without them. It doesn't mean we keep them out of her life or anything, but we do not let their actions frustrate us a whole lot. Do I wish they were more involved, yes I do, but my husband and I are still young by alot of standards so we are doing what we need to without them.
Actually, we do our best to overcome every obstacle that comes our way. I am fortunate that I have had a few close friends that also took care of aging parents so they are my support system. If I get to feeling down, they are there for me.
It has been an interesting journey.
However, people who become caregivers for the elderly usually fall in the 50-70 year old group. If they are not financially well set already, quitting their jobs will jeopardize their own economic future. If they are in the 55-65 year old group, which many of us are, the implications of quitting jobs is more profound. If I understand right, Social Security is based on what we were making the 10 years before we retire. If we make nothing, we get very little.Then what is to become of us as we become elderly? Age discrimination is real and the chance of getting a good job at an advanced age is not good.
I do not think people should quit their jobs unless their futures are well set. Caregiving can put a strain on relationships, and I am not surprised when I read accounts of spouses leaving. If someone is working, IMO, they should continue to work. There are other options. One does not want to take he food away from the caregiver so the care receiver can have it when there are other ways to handle the circumstance. (Sometimes we have to pull away from emotional considerations and look at things logically.)
I know I am fortunate! My brother and I were raised by two loving parents. They were high school sweethearts who remained devoted to each other until Dad died in 2005. Mom is not difficult to live with, and Dad left her financially comfortable. Both my brother and I hope that she lives long enough to spend all her money, although that is not likely. My brother is retired himself, so it doesn't cut into his work to come visit. He has even talked about moving down to take care of Mom, which I discouraged him from doing, as all his kids and grandkids are up there, and I know how I felt when I moved away from mine. The grandchildren are only young once.
You are fortunate! I know many caregivers and their siblings have all pulled the same stunts. I hear far more horror stories about siblings not doing their part than thos that do. You should be grateful, because most are not so lucky!