Readers Respond: Plight of caring for aging parents touched many

June 29, 2007 — -- Our week-long series on caring for elderly parents and relatives touched a chord in our readers, as many responded with heartfelt testimonials about their own experiences and others expressed admiration at the love and courage of caregivers. Here is a sample of some of the responses:

nytewind wrote:

It's not the money, but the emotional toll it takes on a person. My mom died when I was 30 leaving me to care for her dad and my dad both. I took on all the bills, all the grocery shopping, all the cleaning, all the dr visits and hospitalization. I live 2 hours away and was making the drive daily. My grandfather has since passed but dad is still here and declining. Recently I had to force him to stop driving as he is legally blind. I am too young for this. But here I am. They raised me, fed me, clothed me, and put me first, now it is my turn. But it is hard, I have kids of my own, and a job. At the end of the day I collaspe, exhausted. I love my family, but I am tired, and there is no relief ever.Home health, nursing homes, assisted living, none of these options are affordable for folks like us.I'm rambling, sorry this story just struck a nerve..Its good to know I am not the only one out there taking care of my parent, and not resentful about it.. just sooo tired.

eldude1277 wrote:Ive seen this play out with my mother. First with her own Mother and now her dad having a stroke. This is a VERY hard experience to go through. It effects marriages, money, retirements, bickering between siblings and responsibility, etc. Personally, I think culturally and legally we need to change a few things to make it easier to care for people. My sister and I have already worked out what we are going to do when they get to that age and stage in life. But folks, quality of life is much more important than the number of years of life you clock.And also, if your parents are being soley cared for by your brother or sister. Word of advice, get off your butts and do something EVERYDAY for your parents.

VaBelleinTN wrote:

I am 29 years old, and I have been caring for my mother for the past 7 years. She is only 56 years old, but due to many mental and physical problems became unable to work or fully care for herself years ago. The road I have traveled has been more difficult then I even could have imagined in the beginning. My mother has been taken into emergency custody by the state half a dozen times, but every time they hold her for 72 hours and let her go. Because her primary problems are mental conditions and not a physical one the courts won't declare her incompetent. I have some control, but don't have the ability to place her into assisted living. She refuses to leave the only home she has known for 30 years. We tried in-home workers, but after 3 tries with various problems my Mom won't let me put another one the home. I live 5 hours away due to my job, and my only sister does nothing to help. I travel home frequently (usually twice a month), I call everyday. My mom lives in a small town and I am luck that some people in town have been good to her and help where they can. I manage her finances with an iron fist, making sure to save every dime ?just in case?. She is fortunate to have a paid for house and no debt, but when the day does come that long term or more aggressive care is needed I don?t know what we will do. The effect this has had on my entire life has been overwhelming; sometimes I just sit and cry. But those moments are rare, I know that she cared for me and raised me for 18 years; this is now the time she needs me to be there for her.

RAYBURNS wrote:

My 82 year old mother had a fall out of bed this past February. She was taken to Georgetown University Hospital in Washington, D.C. where she was found to be bleeding on the brain and from the kidneys. She went into a coma for 3 days, had to be placed on life support, and had a direct line put in her chest to replace the 1/2 of her blood she had lost. After GT had done everything they could medically she was transferred to Mt. Vernon Rehab Hospital to learn how to walk again and feed herself. On 5 April of this year when she was discharged from Mt. Vernon I was advised to place her in a nursing home because of her cognative state, she would need 24 hour care. Mom has Blue Cross/Blue Shield FEP and Medicare Plan B. After visiting 3 nursing homes in Northern Virginia, I couldn't place her because I was afraid that she would take a rapid decline in health and not live long. I brought her home to live with me and my wife. We have had to ensure some abuse because of her demensia. I had a caretaker with her during the day while the wife and I were at work but Mom hated her and believed she was part of a hit man team that wanted to kill her. I had surveillance cameras installed at stratigic points in the house to ensure that if she fell she would not lay there all day until we got home. I had to tell her that they were smoke detectors and she would have been paronoid about them. I ask God every night to give my wife and I the strength to endure her abuse and have found that people such as my Mom, hurt the ones closest to them. People say, don't let it bother you but it is hurtful for your mother to think that you are stealing her money. I would encourage everyone to get a Power of Attorney for Financial Matters while your parents are healthy so that you can be added onto their bank account and continue to pay their bills for them. Bank of America told me that 95% of the people that have a parent that this happens to can not be added onto their parents bank account and the account just stays dormant until the family has gone thru the court system with a lengthy and expensive process. Anyone having any advise please email me at RAYMOND.S.BURNS@saic.com.

marysrn wrote:

I was divorced with a young child when my mother came to live with me. She was a widow who never tried to change her way of "living the good life". Consequently, she went broke. She was always rather frail, and it became certain that she would not be able to live alone. I worked full time, she looked after my child. She lived in MY house, rent free, paid nothing, and DEMANDED I pay her for babysitting after my child got home from school. The arguments about money, raising my child, what I did with my very little spare time were awful. Years after she came to my house, she was really quite ill and needed pretty much full time care. By then my kid was a teenager and some of the burden fell on him, such as seeing to it that she ate what was prepared for her. Needless to say, it wasn't a happy home, and now that my kid is in his 40's, he still is very cool to me. I can see now why. He was my only child, I have no one else, savings were gone long ago, and he knows that there is a possibility(probability) I will become dependent on him. Guess how I feel—I'll tell you—scared and resentful.

daughterone wrote:I have it a little better than some. Mother is in assisted living, and has managed her money well. She's been a widow since 1970. But the dementia is something neither one of us can handle. Agressive behavior, unable to remember what day it is, numerous falls, and other factors add to the stress of me and my siblings. I feel bad if I don't feel I visit her enough, she wants me to come everyday, but the conversation consists of the same questions and the same answers she gives. It's a forced conversation and I am usually tired after work, or look forward to my weekends without the agonizing trip to assisted living. She knows that she is not in the best of health, but still wants us to take her on vacations, all expenses paid by her. I agree, it's not only the monetary stress, it's more the physical/mental stress. And yes, we all are living longer these days...I certainly want to. But I know that I could be a problem to my family when I get older. But what's the answer? Hope that we die young and have a good looking corpse? Not me. I hope that in my 80's I still have a functional mind and body to the point that I can still be independent. Don't you?

Kimbersez wrote:The hardest job I've ever had.My folks are 88 years old. Mom is in pretty bad shape all around, but just able to remain at home. Dad is in fair condition considering his age, and insists that he will never leave his house. He does his best to help Mom, but I'm sure he gets overwhelmed when he has to clean the feces up in the bathroom after Mom has an "accident".My two sisters and I have a schedule that changes weekly. Everyday, one of us is there to feed them because they can no longer cook for themselves, let alone shop for groceries. The house must be cleaned, laundry done, lawn mowed, etc. And Mom "begs" for more company, claiming "no one ever comes by".It's horrible. It's a nightmare to watch my parents spiral down. But we are there for them.When I look into the future at how long this will go on, it is completely overwhelming! So I just look at each day as it comes along, and deal with what needs to be dealt with.I do realize that they are lucky enough to have just enough savings to suppliment their social security.I guess I'm lucky to still have both parents at this point, but it's hard sometimes to FEEL lucky.One day at a time LORD, one day at a time !

DonD wrote:While I have nothing but respect for those who care for their elderly and often failing parents, those who talk about how much they will do haven't done it yet and there's a big difference.My mother was a wonderful person until she got Alzheimers which of course cost her her mind. and soon after, her life. It was incredibly difficult dealing with her, no amount of patience could convey the message you wanted to send. This period was at its worst when my Dad was in the hospital with a heart attack, most likely brought on by the stress of dealing with her. Some people just can't deal with these situations and it isn't a sign of their personal failings.People with physical handicaps who have a good outlook on life are easy to deal with and support. When the person you love loses their mind, the person you know is, sad to say, gone.

Sibling relationships

snaredrum99 wrote:

My dad is 85 and my mother is 81. They are both in good physical and mental health for their age. My 2 sisters and I have never had a discussion about the "what if's" that are going to happen very soon. The fact that this article brought up the conflict between siblings... well... perhaps this series can help us all with what will be inevitable. I owe my parensts everything. Thinking and planning now may ease some pain and conflict later. Perhaps the entire family needs to sit down together soon and, at the least, try to start a dialogue.

Ludovic wrote:

Both of my parents were born in 1917. They had 5 children, all college educated and comfortably middle class. Two of the 5 (myself and a sister...we happen to be the youngest and next to youngest of the 5) took care of our parents. My sister lived near them and did most of the care of our mother. After she died, I sold my home in another state and moved in with our father and cared for him until he passed away. Our father had Alzeimer's disease so the 3 who lived away didn't call as he couldn't understand them over the telephone. However during the last 4 years of his life, the 3 away children made only 2 visits each to see him. When he passed away, the Greed Gene came out in all 3 of them and they ended up with everything, the entire estate. The sister and I who dedicated many years to our parents care, didn't bother to fight them as we had something much more valuable then the money that they took, we had our memories. The money that the other 3 were so eager to get will be spent in short order....but our memories will last a lifetime. I have chosen to sever all ties with those 3 siblings permanantly. The realization that they did not care enough to vist their own father during his final years was enough for me to realize that if they had no more empathy and compassion than they demonstrated for their own father, well, .....I certainly can't count on them being there for me in my time of need. I look at the 1/5 of my parents estate that I was cheated out of as a reasonably inexpensive divorce from 3 people that I don't even like. Not a day passes that I don't embrace a pleasant memory of my mother and father. It was sad for a brief period to lose my siblings in such an emotional way...but knowing what I know now, if I had it all to do over again...I would still take care of my father, even knowing that 3 of my siblings would end up demonstrating such selfishness and greed. Taking care of my father was the richest experience of my entire life.

number11 wrote:

I am the youngest of 11 kids. The oldest is 27 years older than I, almost like three generations. My parents left me & my sister in charge of their needs, (POA put in place 17 years ago). My siblings do not want to help keep my mom at home since my dad died, but yet they complain constantly and make our lives miserable about our choice to put her in a nursing facility. She requires skilled care and seems happy. I have never been close to my older siblings and find them very self centered. Most of them turned their back on my parents when their health began to fail more the past two years, but now, they want a "say so". I love my parents and have only ever done what they asked of me, I have sacrificed a lot, while the others sit back and judge. I feel like we are on an island battling for our lives. How do we cope with this stress and the self centered siblings? I know it is easy to judge, but they won't do. My two sisters and I spent all of our time at my mothers caring for her, while some of our siblings lived just three houses up the road and would not help stay with our mother, or help with her care. I live 45 minutes away, and do all Dr. appts., medicines, etc. I feel guilty moving her to a facility, but I know we are not capable of reacting to her needs. I just can't stand all of the hate around this situation. Bigger families mean bigger problems, more headaches, etc. Do we just write them out of our family, there is no reasoning with them at all.

LSW wrote:

My dad suddenly dropped and passed away in front of my mother and I almost 6 years ago. After running back and forth between my home and my mom's home because I was worried about her (and going through a nervous breakdown) my husband decided we needed to build a home and have a walkout basement apartment for my mom... I have 3 other siblings... not one of them jumped in to help out! As a matter of fact, one of them hasn't talked to my parents for 11 years — when my dad passed, she hired an attorney to get a copy of the will. My oldest brother hasn't talked to my mom since the funeral. My other brother makes visits 2 times a month (he is about 45 minutes away) with no calls in between. This article hit the nail on the head that I know they feel that the other siblings feel "she's taking care of her so I don't have to worry about it" — but you know what? It's ok, I love my mother and I will take care of her. I would have done it for both parents and even my dad had it been my mom who had passed. They aren't animals, these are our parents — for better or worse, they raised us — I know some folks have issues with their parents, but this is when you need to be the better person and step up to the plate... what goes around comes around... This has also shown my kids the value of family, the love, the patience, the commitment and sacrifices that life is all about... I thank God for my husband, my kids and my parents and pray for my siblings to wake up one day before they find themselves in the same situation... Oh, and I've been accused by one of my siblings spouse and their daughter that my mother bought my house! I keep offering to show them the mortgage statement... I charge my mother NO rent, nothing... she has her groceries delivered and pays her phone bill... but it's ok... I know the truth and I am a better person because of all of this... I worked in a nursing home, my mother will NOT go into one if I can help it!

Nursing home experiences

sharona wrote:

Great article. As a Certified Dietary Manager, I see this happen every single day. The kids are just torn up about placing a parent in a nursing home. They have already looked at every option. As professionals, we are there to take care of your parents. We come to love them as much as our own families — they are part of our families now too. I've even had cooks who would check on residents to make sure they ate something. It's people who really care who go above and beyond the pale. Health care workers are just that.I feel sorry for the guy who doesn't want any part of taking care of his parents when they need him the most. I'm looking at taking my mom in within about 10 years. She's already showing signs of Alzheimers (which her mother had). When her husband dies, it's going to progress. Now she has a reason to hang on. He's not well though and refuses to move to Colorado. She'll be right down the street where I got my start as a health care professional and I'll be there daily. I'd like to get her an apartment though until she really needs the 24/7 attention. She also lost out on inheritence. She and her older sister took care of their mother and father for years — even moving in with them. Younger sister and brother took everything. It was very ugly. They might have gotten the money but they lost their family.Thanks for the very emotional writing. Nursing homes are not a bad thing. We do what we do because we love the people we take care of. — Sharon in ColoradoAbigail S. Adams wrote:

Perhaps not all elderly living institutions are bad, but my family's experience was disasterous. After my mother broke her hip, the rehab center refused to take into account any of her disabilites but the hip and forced her to do exercises that caused her so much pain she woke up one night begging me to cut off her legs (basically, they had tortured her into delirium). They offered her Tylenol for this pain. The staff was so incompetent we were terrified to leave her there alone for more than an hour — they kept trying to give her medications she wasn't supposed to have, and were consistantly late with the medications she needed to keep her alive. And this was the most highly-recommended (and expensive!) center in our metropolitan area!My experience with *any* so-called "health" institution is that when you enter it, you might as well be in Gitmo — you are forced to sign away all your basic rights, even to being able to go to the bathroom when you need to (buzzers not answered in time) and eating and sleeping when you want to. (Take a look at the Geneva Conventions, and see how many of these basic rights are denied to hospital patients!)And when Mother fell one too many times, and we admitted her to our local hospital for "observation" — the staff decided she was in "terminal dementia" (ie, her behavioral problems were caused by her being in the early stages of death) and used the "no heroic measures" clause in her living well to euthanize her. They called it "terminal sedation without hydration" but it was murder, plain and simple. Two years and 4 counselors later, I am still struggling with such PTSD ("guilt" doesn't cover it) that I am about to lose my job. Maybe if I check myself into that same hospital they will "terminally sedate" me as well, and eliminate one more member of the "surplus population."Welcome to the nightmare, America — there is no good way to handle this issue, and it's only going to get worse.

riseofthemachine wrote:

Most Nursing Homes do a good Job. Many are bad, yes, but Most are good doing a good job. Most of the issues come when people who have mental issues get involved and say Nursing Homes are H — holes. That causes so much wasted time by the States and the Staff.

mnstrpc wrote:

Every situation is unique. People can pass judgment about nursing homes or assisted living facilities, but until you've lived your own crisis and faced those battles, you can't say that you know what it's like, or know what is best for someone else. The nursing home where my husband's grandmother spent her last 10 or so years was very good. Not perfect, and very expensive, but very good.I am 34 and caring for my 76 year old mother who has dementia, rheumatoid arthritis, asthma, diabetes, and a heart condition. She still lives by herself. I am married less than 2 years and struggling with fertility issues to start my own family with my husband. Moving my mom in with us is not an option — we have a 2 bedroom starter home that is tri-level — there is no where she could stay where she wouldn't have to go up and down stairs. I also work full time 40+ hours per week; sometimes up to 55-60 hours per week during "crunch" times. I go over to my mom's several times a week to get her groceries, do her laundry, and set up her meds for the week for her. But I can't make sure that she tests her blood sugar 3x per day all the time, and she refuses all help from outsiders. I have 3 brothers, but only one of them lives in the same city, and he does very little to help. His relationship with our mom is more complicated because frankly, she has never been a real affectionate lady, and when my brother was 12 years old she threw him out of the house for 2 weeks because she was mad at his father (he's my half-brother). He stayed on friends' couches and ate out of dumpsters until she relented and let him back in her house. So I CAN understand why he has some ambivlalence. Everyone's situation is different. In a perfect world, everyone could afford adequate health care; everyone would have a good support system; everyone's family relationships would be warm and loving and we'd all be able to care for our elders in our homes. We don't live in a perfect world.

Elderly parents

grammom wrote:

I am that 'elderly parent'! I have told all 3 of my sons that I want to go to a nursing home when that time comes. I would love the first step of 'assisted living' but I am not blessed financially so the nursing home must be my choice. I have picked out one here in the city that I prefer to go to when it is needed. The last thing I would want to do is be a burden to my children at a time in their lives when retirement is in view and they have responsibly fulfilled their duty of raising their children. That is the time in life when they and all other children of parents...need to relax and enjoy a few years before it is their turn to move to the nursing home! I know my children love me and they don't have to prove that by moving me into their home. Thank God for a final place of 'home' that our nursing hmes provide!

JohnPaulJones wrote:

This is an interesting article. I am 81 going on 82 and my wife just turned 81. We are hale and hearty. We both cared for my mother who died at age 88. She was in a nursing home last 2 years and my wife fed her lunch and I fed her supper every day. I also ordered her menu. She was pretty well out of it the last 3-4 months and did not recognize either of it. Worst part was taking her car away, or rather stopping her driving with 3 accidents in one day. Removed the battery and let the Cadillac rust away under the carport. This is a bad deal for anyone. We do not know what will occur when we become unable to care for outselves. Two sons and two daughters all away from here, very successful, and very busy making a lot of money. It will probably be an extended care facility. We do not wish to be a burdin on anyone, nor interfer with their lives!All property in two trusts with children as successors, living wills, everything. Adequate money to do what-ever it takes.JohnPaulJones (Navy WWII)

Workplace issues

ibw wrote:

I don't think enough is said about the effect on the workplace of caring for elderly parents. As an only child in my 30s I feel like I am ahead of the elder care curve. My mother was sick for many years with complications from diabetes but somehow always had a positive attitude. My father, also the eternal optimist, cared for my mother for the last 4 years of her life during which time he retired to be able to sit by her side 8 hours per day 7 days per week. It was also during that time that he was diagnosed w/ Parkinson's. He deteriorated quickly b/c he only focused on my mother's health and not his own. So when my mother died 3 years ago, my husband and I began to care for my father at our home. He had become completely unstable and a bit forgetful. We moved him from one state to come to another to live w/ us. We had around the clock care in our home which cost a fortune and I missed a lot of work. No one at my place of employment understood why my phone would ring all day or why I would have to leave in the middle of the day. While my colleagues were close to twice my age or Boomers, none of them had ever had to care for an aging parent and so they looked at me w/ complete disdain and constantly made snide comments. Luckily my supervisor and the CEO were supportive and gave me the flexibility I needed so that it didn't matter what anyone else said. I was far more productive and didn't miss any deadlines when given the flexibility to work from home or the ER or the doctor's office. Employers need to prepare for this kind of situation and provide that support. The most innovative companies share elder care expenses w/ employees. My new company covered elder care expenses while my husband and I went on a one week house hunting trip! They have also arranged w/ the relocation service to help us find elder care services in our new town/ state. It makes a huge difference.

sport wrote:

Someone mentioned a great point about workplace support — or lack of.I was also relatively young in dealing with my father's illness (stroke) in my 30's. The people at work could not understand why I had to take time off for doctor visits etc. I had no family sick time, and each time I had to use vacation time. It was very stressful. I was single, and had to plan vacations etc around caring for my dad. He was not very thankful either.Now, my mom is in her 80's, not sick, just losing memory, not cleaning, etc. She is "with it" enough to get mad when anyone try to help. "I don't need any help"I'm so tired of taking care of my parents and my children I sometimes just want to scream !!!But, family is the most importnat thing, so it's worth it !Hang in there everyone..

Long-term care insurance

rjehrlich1 wrote:

My wife and I are both only children, and we have no children ourselves. We are both 77 and decided with no one to help us later on, we took out a long-term home-care policy on both of us. We paid in for 5 years until they raised our rate (which was enormous) or reduced the benefits. We reduced the benefits and paid for 2 more years, when they again raised the rate. We decided that by the time we needed help, there would be no benefits left. So we dropped the policy after wasting thousands of dollars. We now save the same amount we were paying, and hope we have enough saved to care for one of us at home when the time comes. My advice: forget about long-term care insurance. It's a rip-off.

tnwhitley wrote:

Conseco has allowed us to catch up missed payments for an elderly friend with Alzheimer?s who forgot to pay the premiums for the past several years because of her condition. The policy, now re-instated is supposed to pay $105 pre day of her nursing home care. They've acknowledged the first claim for two months and I expect they will pay as they have said they will. How many insurance companies do you know that will let you after the fact catch up you payments, re-instate your long-term care policy and start paying out money to you? I have to hand it to the local Conseco claims people for their help & kindness in going out of their way to help us. We?ve only had to submit a statement from her Dr. explaining how long he had been treating her for Alzheimer?s and pay the catch-up payments.So, even though some people have had problems, there are some good stories as well.

steelsmith wrote:

It is all a balancing act. If you drop dead of a heart attack did you really need to have long term care? Imagine having paid thousands in premiums that could have been part of your estate for a coverage that was never used. Thank god. Prudence vs Fear Uncertainty and DOOM (FUD). The key is to stay healthy my friends for as long as you can.

Caregiving advice

Tina2000 wrote:

Been there and done that. This article tells it like it is. All you can really do is read articles like this one. Learn what Eldercare options that exist where your parent lives and try to stay ahead of the game. AARP is a great resources and there are many good books on the subject. Put the plan in place before you need it. This situation deteriorates fast and you should do the leg work before a crises comes up. Your parents will always say they do not need help until they can no longer deny the fact and then they will expect a solution instantanously. It does not work that way. My husband and I went thorough that with his mother until she died last year at 91 and we are going through that with my parents now. Now we are investigating and lining up support systems, we have met and will continue to meet with siblings to divide up the work and responsibilities. Don't go it alone that is foolish. We had the money talk with my parents and we know where their paper work is, how they pay their bills, how they keep their house running. We know where the wills are and who has POA. We have a plan in case we have to step in to take over. You cannot do this on the fly and in the end you have to know in your heart that you did the best you could and the best that your parents will allow you to do. One last thing. Get your own situation in order so that your kids will not have to go through this stuff either. We are doing that too.

Tina2000 wrote:

Another good article. This is hard stuff and it takes an emotional toll. If I were to add anything it is this. Taking care of a elder is a emotional challenge because of some of the negative behavior exhibited by the elder. The changes in personality and the manipulation can be overwhelming and should be acknowledge. Elders really know which buttons to push and will push them. As a care giver you have to prepare for this and protect your self.Don't try to take it all on and get as much outside help as you can. The care giver needs support and respite from what can be a years of care-giving duties.My husband and I had each other when we were caring for his mother and the same is true now that we are gearing up to do the same for my parents. Obviously as the person becomes more dependent they will demand more of your time and want you in sight all the time. This is not possible, you need time away from the situation.The Elder will also reject some of your interventions and will display hostility towards your efforts. That is part of the deal. Adults do not like to be helpless. So you do the best you can and have confidence you are doing your best. We brought in nursing care and housekeeping services to assist us. If people offer to help don't be a hero, use them even if it is just running to the store for you or visiting so you do not feel isolated. One last thing. I always read about guilt. Guilt that you did not do enough. You can only do your best. Remember, you are managing decline. You may be able to make the person in your life comfortable and safe, you may be able to make the situation stable but this is only temporary. Their bodies and minds are failing so having a realistic expectation about what is going on will help with the guilt.