Interesting discussion. The elderly aren't a viable constituency, which is why elder issues never arise in the political arena. When we get to the tipping point where there are many, many elderly overrunning the system is when you will see political proposals related to assisted suicide, withholding care, etc. Part of the problem with our society is not valuing life in all its forms. The elderly are dispensable, in the government's view - and their take is if you want to sacrifice your life, career, health for your elderly loved one, go for it - but you will get no help from them.

if the government can hand out SNAP benefits for people that do not work why can they not help supplement care
Of older workers so productive children can continue to work? We are saving thousands of dollars by providing care and trying to keep our parents healthy and out of hospitals and nursing homes. We are sacrificing out careers and not contributing taxes when we are unemployed and under employed because we are caring for our aging parents. SNAP (food stamp) beneficiaries could work off some of those benefits by providing some respite care for beneficiaries. Either they do a good job or lose the benefits. If they do a good job then at least they'd be making a wonderful contribution in exchange for those benefits. If they lose benefits because they do not want to offer services then the government wins because they can have extra money in coffers to use on some respite care program to help caregivers. I'm sure it's not as easy as that but there has to be a creative way to address this societal crisis that caregivers are facing the longer our aging parents live and with deteriorating health issues. How this issue has not made it to national debates is incredible.

My Mother is 89 & has Alzheimer's. I have a 13
Year daughter and I work full time. My brother has a wife and no children He lives in another state. I use all my Mothers SS on caregivers and pay for everything else. How am I suppose to save for college for my daughter, and keep my health?
The places that accept medicare are subpar and I have a teachers salary. I can't pay 7000 a month for memory care let alone put anything away for my own retirement.
I was scolded the other day on the phone by the nurse from my Mothers doctor because I sent her with the caregiver. I have no vacation left and the stress of taking a day off with my special Ed students isn't worth it. I tried to explain how I am pulled In so many directions and I was told I am a bad person for not caring enough for giving up a days pay. I feel that something must change and I wish I could find a decent place for my Mom.

I would agree that you can't blame an employer for wanting his business to be a success. An employer can only do so much for the caregiver before it hurts his business. When you say the government doesn't owe me I firmly disagree. Every year I faithfully and honestly pay my taxes. Every year our government spends billions and billions aiding and supporting people in other countries. It's about time that our government starts helping the people paying the taxes in this country! This caregiving situation is going to be a crisis in this country and our government better come to grips with it and come to grips with it soon. Medicare and Medicaid although helpful in some respects fail miserably when it comes to taking care of the debilitated elderly. American society needs to reevaluate both programs and make them more in tune to assisting the elderly and caregivers!

Not all employers are sympthetic. Last place I worked you had to show a 40 hr week using vacation or personnal time to make up for time lost. I watched my grandson on weekends and wasn't available to volunteer. This was frowned upon. Don't think they would be flexable if I needed to leave for emergengies with Mom or Doctor appt. I would had to leave the job. Not everyone has that luxury, especially in this day and age. Me personnally couldn't handlea job and coming home to another one.

Work disruptions due to employee care giving responsibilities result ... Consider your parent's safety, isolation, ability to be left alone, medical needs ... making it possible for you, as caregiver, to go to work assured that your ... the day or providing surveillance of your parent's home when you can't be there.

Antique Lover 62, thank you for your comment...I could just picture your dad's face when he knows you are going to be with him...You are lucky to have a good husband, child and understanding employer...thank you for your empathy and sharing.

The article is very close to home. In 2013 both of my parents moved into our home. Mom became confined to a wheel chair due to bone cancer and easy bone breakage, Dad was unable to help due to his own health issues and Alzheimers. Mom passed away in October and Dad is still with us. One of my children lives with us, and is going to school. Dad can stay home alone, but doesn't get his own meals. If she needs to be out for an entire day my brother and I take turns going home at lunch from work to check on him. She gets his meals during the day, and checks on him when shes home, but she is in and out, and studying, and doesn't really spend any "time" with him, such as just talking and taking him places, etc. I was able to change my work hours to 32 hrs. per week. My manager is fantastic and totally understands, and supported and approved my change of hours. Financially I need to get paid for staying home with Dad, otherwise it would not be possible. He has the monthly finances to do that. When my day off comes around, he is so excited. He smiles all day.

Hey Globetrotter

I agree with what you are saying regarding transferrable skills, but unless you have done what we do, you would never understand. I guess I will find out. I have added caregiver to my resume, but have not elaborated and maybe that is what I need to do. So far, the last month, I have only had a job interest bites and nothing so far. At my age, I expect little and I took a 5 month sabbatical out of country which was lovely, letting my hair go to gray. So that should really thrill the prospective employers!

One thing is I do not have the guilt of placing my mom in assisted living since the sibs did it. Of course they would never had done what I did because it would have disrupted their lives. They never considered I might have want to have a life. Especially the ones that were getting pensions doing and going where they pleased. They are the ones that acted the worst after my moms fall. God forbid I might get a larger percentage of the estate, which is nothing. Several folks think I have been written out of the will and think I should fight it in the end. But who wants to have contact with such evil sibs? But, surely I could use anything financially, since I gave up so much.

It is a tough call either way and one has to make sacrifices. Mine came from the heart and my heart still hurts that I was treated so badly, when I was only trying to do the best for my mom. My mom is not capable of expressing that. You have to hope their is something in the end for our acts of goodness....

How interesting that a number of contributors to this post are in the same age category - late 50's. As a result, there is the risk of age discrimination and a significant gap in work experience. However, the technical/transferable skills and experience in a variety of roles and tasks should never be underestimated, and depending on how that is presented in a resume or at a job interview, it shows the potential employer the reliability, versatility, problem solving and decision making skills that you have developed.

I, also, have been relegated the caregiver role by default because I am single and live with my mother. The guilt that is often associated with placing a loved one in a nursing home is compounded for me by my mother's history: she looked after her mother from during adolescence and her early to mid twenties, and was placed in the role of helping to raise her siblings after her mother had a stroke. My mom watched her mother die at home. As a result, she has harboured bitterness at losing out on social life, education and employment opportunities, so there is the expectation that I will look after her. She is now 92 and in the advanced middle stages of Alzheimer's. However, times have changed. While I am committed to keeping her at home, I also need to continue to work part time on very low hourly wages while trying to establish a financially sustainable business. I, too, have missed out on professional development and networking opportunities, not to mention social and recreational activities. There is no work/life balance. My mother is increasingly unable to cope with being alone, even for a couple of hours. My job is quite convenient in this respect, three shifts of maximum an hour and a half Monday to Friday. My father died in August (he was in a nursing home for 10 years), so she is having difficulty processing and dealing with this information. I am nowhere near as patient and empathetic as I should be, being stressed out and overtired. My siblings, as many of you posted here, are supportive "from a distance" as long as they don't have to get involved, except for the occasional visit and rennovation project. I struggle with this catch 22 situation - loyalty versus health and safety. My mother has made it particularly difficult because she rejected respite relief workers who would come on a regular basis (she complained of the length of time and, in all fairness, being profoundly hard of hearing created more stress for her. She refused to participate in a day program because she didn't want to be treated like a child and didn't like structure and having to get up in the morning. So my resolution is twofold. Just as in dad's situation (when he would put himself at risk for a fall and could not be convinced to do otherwise), mom is an adult and her choices include an element of risk, and we have to live with that risk. It was very helpful when dad's patient care coordinator put it that way during a family meeting (I'm sure I lost something in the translation but the essence was accepting the patient's decision and learning to live with an element of risk). The other way of keeping worry and other negative emotions in check is trusting in God to take care of her while I'm not there. Amazingly, except for rather chronic fatigue and multiple chemical sensitivities, I am in good health. However, I do not have the energy or time to do yoga as often as I used to. In terms of my self employment, I believe it is all in the timing, and when the timing is right, it will probably become financially sustainable. With respect to me and mom, at this point in our lives, our stages of development have converged. We both have our crises to work through. Despite the trials, failures and significant obstacles I faced in my life, I am determined to achieve a state of generativity rather than stagnation, and integrity versus despair. I am far from the perfect caregiver. I make a lot of mistakes. But at the end of the day I can say I did the best I could, and that's all anyone can do.

But isn't the Government supposed to represent us? They have established Medicare (that we pay into, so they aren't really "giving" us anything) and Medicaid. Can't forget ObamaCare... (some states translates to Medicaid) Medicare won't touch Alzheimers as far as financial assistance for caregiving, and for good reason. They would be overwhelmed and unable to sustain. I'm not anti-business owner, there are progressive companies out there that understand workers' need a work-life balance. I wonder, what would happen to all of the people that are being taken care of by family members if the family members dropped them all off at the various hospitals for care. (??) We take an enormous burden off of the health system/industry and yes, government (which would inevitably have to create another tax structure to support) that is not equipped to care for these folks.

My long-winded reply basically boils down to the fact that we as a society (American) need to take a look at how we "do business". Are we as human beings supposed to be machines that are running to ...excuse me ... but where is the fire??? Is it all about the Almighty Dollar? We see where that is leading us.
And if you look at the projections, there are going to be even more people diagnosed with some kind of dementia, so sooner or later, this is going to affect everyone at some level. Shouldn't we make allowances for that?
Isn't it time we evolve into a higher level of human-ness and um...actually care about each other and quality of life? Call me a dreamer....

I don't think employers should be vilified here.
It is not unreasonable for the boss to want to prioritize the success of his business (which supports other people too).
If he doesn't look out for the business and it's success - who will?
And then all will be out of a job.
As an owner, there are many, many sleepless nights. I am not a bad person for having expectations for employees.
The government doesn't "owe us". I'm grateful for what I get from hospice but the government doesn't owe me anything.

Francis Give a Hug, thank you so much for your comments. It is truly the stress of what I am dealing with. The employer cares more about the business, than they do the individuals, unfortunately...I just pray that they will give me some credit for doing what I can to care for more my mom. Thank you so much for your kind words!!!

Loveshermom: you bring up a really good point also that not too many people talk about..but I've had happen to me what you described. In today's competitive work world, they may say (the employer) that they understand, but if it happens too many times, they will find a way to replace you. THAT is very, very unfortunate. Not to mention the added stress and how it affects your work life.

Thank you for writing this article. Our Country, (Medicare) though, really needs to step up and do something because this disease ultimately takes 2 people out, the patient and the caregiver. (UNLESS you are really, really wealthy and money can buy all the help you need). I keep saying it, some people are getting very wealthy off of this disease and SO MANY are suffering because of it.

I meant in competencies.

Thank you much for sharing...so true to my heart right now and even just what happened an hour ago...I was preparing for work, waiting for the caregiver to arrive and as time went by I finally called care giving service and the person scheduled to come decided not to!! So I missed a day of work, at the last minute which doesn't help things with my job standing. They do understand that I care for my mother, but it is so frustrating depending on others to care for her. I am not as upset as I was but I hope that I don't loose my job over someone else's incompetents.

My husband and I built our small house on a large piece of property 40 years ago. Our nursery/garden center grew up around the house. My wonderful husband died 5 years ago and now our son and I operate the business. I do all the phone work, accounting, etc. It's 24/7 this time of year. (And exhausting). But I love it and we are keeping my husband's legacy alive and making it even bigger and better.
I am also full time caregiver for MIL. My business office is in the basement of our house and her bed is in my living room directly above my office. So I run up and down the steps checking on her etc all day. Hospice is a help as they send an aide 3x/wk to bathe her in bed. I take care of her because I can make it work. But I am so tired. I get to see people all day (employees and customers) and it helps me mentally. But at this point I wonder if she will outlive me.
Anyway, that's how I do both. - and it's a lot. Trust me.

Balancing career and caregiving has been a challenge for me, even though my parents [mid 90's] and I live under different roofs.... even logistical care can be emotional draining. I am a senior citizen myself, with a career that I love and need, and trying to help my parents with appointments, hair cuts, errands, weekly groceries, shopping, etc.

My Mom is understanding that my time is limited, but my Dad doesn't understand. He thinks I can just drop what I am doing at work and hop in the car and drive him to Home Depot. I lost an outstanding job a few years ago because of all the time I took off running here and there.... and a Manager who was very unsympathetic. I was just shy of reaching my 25th year with that company. Now I have a job with a sympathetic Manager [who's wife had Alzheimer's] but this job has no benefits like what I had with my previous job.

One time my Dad asked my to resign from work so I could drive him and Mom to wherever they wanted to go..... I then asked my Dad "did you quit work to take care of your parents?"... of course I knew his answer would be no, as neither of my parents were hands on with their own parents. Plus I told my Dad that since I was female and didn't earn the same salary as my male counter-parts, it will take me a few more years to make up the difference.

What really burns me is that not long ago I found out that my parents could have easily hired a driver... my gosh, I could have kept that job and had made it to 25 years and then some with a really good retirement.

Because of stress related health issues over this past decade, I will never reach the age of my parents.... I would be lucky to reach even 75.

I am an only child and I tried to continue to run my business and care for my mother. My business suffered although my husband took over my responsibilities on site and I took over Mother's care and produced a monthly magazine from my desk at home. I finally hired a live-in caregiver. As her condition has worsened, I still have a lot of responsibilities, especially at night. It's a tough road to walk.

Businesses are not sympathetic to caregiving. Yes, there is the Family Leave act but that is only allowed for so long. Take too long and u don't have a job. You are made to use any vacation and personal time. Meaning, when u come back to work you have no time to be able to take parents to appts. I would never have been able to deal with a 40 hr a week job and caring for someone when I got home. Something would suffer. We r living too long. I don't think our bodies and minds are suppose to go much past 80. In the 60s life expectancy was 65. So those of us retired wouldn't be taking care of parents. But modern medicine changed that. Its doesn't seem fair that our parents have to live their final days with no memories or not well physically.

I work full time to support my husband and myself and to pay off a lot of debt that we incurred. My husband with his 8+ years of ALZ can manage most things on his own, but he relies on me for everything but the very most personal such as bathing and toileting. As soon as I get home it begins with "what were you thinking for dinner". It's beginning to get really hard to stay happy and kind when all I want to say is "I'm not thinking about dinner". I'm still doing a pretty good job of hiding my stress and true feelings. It is so hard when someone you love and pledged till death do you part, in sickness and health, is becoming someone you don't want to be with every moment of the day/night that you are not working. I cannot retire because we barely making with my salary. I don't want to be a "caregiver". I want to be a wife, friend, lover, companion, etc. etc. This is getting harder every day, and I really don't know where we are going. I just keep putting one foot in front of the other and trusting God. It is a lonely place.

I am caught in this situation with my husband who suffered a massive stroke 3 yrs and 3 mths ago. Aside from some cognitive impairment, he is hemiplegic and is confined to a wheelchair. We have no long term care insurance and his medical coverage does provide for "custodial" care. We have no family or friends that have stepped forward to help, except for our young adult daughter. I am several years younger than my husband and now fear that no assets will be available for me when I reach retirement years. I am exhausted and depressed. I have reached out to organizations and our local department of aging, but we are not poor enough (yet) to qualify for services and we cannot afford the type and amount of care he needs at home. My health is suffering due to the amount of stress I am going through and the lack of sleep. My career has suffered tremendously because I had to decrease my hours from full-time to part-time and have to miss educational opportunities and other professionally related activities because I have to watch my husband. There has to be a better system.

Dr. Washington i enjoyed reading your article. I have been a caregiver for my mon for 15 years and it;s a job, also i had my father and my grandmother at one time. There is always one person in the family who will be the caregiver. I am 58 years old, divorced and no children, so i have the responsibility of taking care of my mother. My sibling won't help and the sad part is they won't visit and calls on special occassion. I pray daily for strength, because i work and take care of mother. Is there any financial help for the caregiver. I work part-time 25 hours a week.

I am fortunate to live in Alberta where nursing home costs are reasonable the difficult decision is when to make that very difficult decission as my wife is getting close to that time(her name is getting close to top of waiting list) I hate to turn it down but very hard to do it .health care providers and physiatrist say for her safety and care and my health I should SO SAD

o so true......so your parent with dementia has the finances to go to a facility...and you've been the caregiver up until that time.....while you've had a business and or a career...now you are managing the care of your loved one at that facility unless you're the type of person who just drops someone off and writes checks.....I've experienced this scenario in my family watching other relatives...in my case I moved my mom to a memory unit 5 minutes from work and 8 minutes from home,,,,met with a financial planner to create a budget with realistic goals....and work extremely hard to make it all happen....like people in the military and other taxing occupations - you learn to rest and recover when you can based on the economics of our times and the love you have for the person you are choosing to care for

I became a caregiver by default being single, no children, female and living with my mom due to circumstances. When she needed the help, I was there. Things proceeded to get worse in what I was able to do, and I hinted and asked for help. Siblings did not heed my call. After my mom sustained brain injury from a fall, the older sibs, who have pensions and living the good life, swooped in. I think they thought I wanted her house in exchange for caregiving. That was the rumor. It was their guilt for not helping and the estate, I believe, that motivated their ugly behavior. The 3 oldest got ugly, tried to evict me and take over. They kept my mother from me and tainted her brain.

I sacrificed my own time, finances and life. Now I am paying for it trying to find work and rebuild my life. Being a caregiver of working age has no honor except to the people who have done it. I put that on my resume as I start to look for work again, but not sure it is a good idea. I guess I will find out. At almost 58 years old, who wants to hire me? I do not regret helping my mother as it was the right thing to do for the sacrifices she made, but I wish the siblings had helped so I could have preserved my career. My own regret is that I did not take care of me, but it was difficult to do both. I hope these comments can help others, but I think when you are in the midst of it all, your emotions take over to do the right thing. Planning ahead is key.

I would like to see an article about how difficult it is to find employment once the caregiving ends. Are there any caregiver friendly employers out there? Good job, those of you that have understanding employers and have the stamina to be able to endure a dual role of working full time and providing care for a parent the remaining 128 hours a week. And some of us that provide the care are simply unable to work. It is a strenuous job, caregiving. Many of the unable siblings are not able to deal with the emotions of witnessing the continuous decline while providing around the clock care.

Many of us have siblings that do not provide any sort of care assistance for a variety of reasons, nor do they want to use parent's resources to pay the sibling caregiver. Often times these are the siblings with the eyes on the prize of a substantial inheritance when the parent passes while the caregiver's resouces become rapidly depleted. Sometimes these unhelping siblings have parents POA and will expend large sums of parents money to fight paying the sibling caregiver. Policies and laws are required to protect our parents from legal expenses caused by vindictive siblings that are trying to protect their inheritance!

Good luck if you are doing this alone, you work, and your loved one develops serious medical conditions in addition to the dementia. I am now an only child. My widowed mom lived with our family only for a year and a half when her other health conditions became extremely difficult to manage keeping her at home, in addition to the dementia. She was hospitalized four times in one month and had home health aides for another month, but they were not RN's. Finally due to the other health conditions I had to make the decision to place her in rehab on the way to a memory care center. My own health was beginning to be affected because of the constant worrying and lack of rest. If I became disabled, where would that leave my mom? I agree totally that the conversations and decisions about long term care need to be made well before the needs arise. Several years ago when my dad went into a NH, my mom told me they never expected to need such care because "they expected to just die".

Dr. Washington I enjoyed reading your article. Perhaps someone in Hollywood can make a film from the point of view of the primary (sole) caregiver who also works full time outside the home. It is something that needs to be seen by the American public so they realize that as Americans we have no real help for such caregivers. Yes if you have siblings that help, if the elder has a spouse who helps (if their spouse has not passed away before them), then the pressures on the caregiving "team" of family members is less. However, often it is one adult child or one spouse, trying to provide the lion share of the care.
I would suggest all adult children with parents below the age of 80 years, investigate and purchase long term care insurance so they can have funds to assist with the financial outlays which will kick in if they intend to continue working and being the elders primary caregiver.
Medicaid pays only for nursing home coverage not long term care in the patient's home. Most Medicaid nursing homes provide sub par care so with either large financial assets or long term care insurance you might be able to keep working and stay in the home with the elder providing primary care outside of your work hours. This was my solution when as the only child of my widowed father. Still a difficult proposition but my father was able to enjoy being at home the last 3.5-4 years when he needed help and supervision to live his life out. However, without his long term care insurance I would have had to quit my full time job and cut my career short to keep him at home.
People always tell me the insurance is too expensive, but living without it when the parent needs it, is really too expensive. Basically, without either the insurance or a wealthy parent's assets, you have accepted a Medicaid placement in a nursing home as the desired way for your loved one to end their lives.
Again, I have walked this path alone for almost 4 years and I agree with your article. However, often no one is really there to assist as mentioned in your article so you need to be able to hire home health aides and that takes personal family resources.