I don't know where to begin. My mom and dad live next door. My mom, 73, cares for my dad, 70. My dad has Parkinsons in advanced stages as well as dementia. My mom has diabetes that she does not care for and now has severe neuropathy and decreased kidney function. I took her to the hospital yesterday after she fell into the shower while trying to use the toilet when she lost her footing. Now she has a hematoma and elevated K levels. I work from home for my company and when I am home I have to work, not take care of my parents and I am suppose to travel 60-70% of the time. Things are getting bad fast, and I can't afford to quit my job. I have bills, retirement to save for myself, a husband and son to care for, college to save for, etc. and I don't know what I can do. My parents have a small nest egg, but not enough to cover in home care and that is all they want. Ultimately they want me to quit to take care of them. That is what my mom did, that is what my aunt did, but I can't afford that. What do I do????
I find we have too often focused on the wrong side of moral dilemmas in our modern world. Yes, things have changed, we live in a mobile society - in fact, all the technological "improvements' brought by modern ingenuity, have been mostly directed by men, who believed in improving access to work or war, and in a corollary belief that women should be protected, by them. Ideology from Europe maybe, passed on not directly, but through the kinds of expectations of both genders - I'm exaggerating some, but life has its real dilemmas.
Most of us would interrupt our day if we saw a dog walking out into a street, about to get hit. But with modern medicine, mobility, choices of places to warehouse elders... we now have the option to look away. We often do it while feeling guilty and worrying, but the options are there and we choose.
But I've learned a great deal on this subject, in the years where I alone raised my youngest brother, born with disabilities, but lost when it came time to leave home and fit in safely and positively in an adult world.
For when I stayed close and sought peers or teachers, helpers, almost nobody in the adult world around him had the ideology of helping him. Many paid helpers, but one learns with time, that they are not supervised in a way to expect them to note his efforts, nor to follow through on issues they see.
I like the article which started this discussion, for it shows me the conditions under which a family member could be paid to give the care. It is not complete however, for it does not have a retirement fund planned - it only suggests that a family member can be paid at the level of other direct workers - who have no job security or retirement plans.
I think we need MUCH more realistic conversation, problem solving around real issues of each family member, backed up by the attitude that caring for the caregiver WELL is worthy and a cheaper way to address real obligations to the aging parent or sibling. Respect the efforts and the sense of duty.
Being a Family Caregiver, should not be treated as lowly as a part time caregiver for a company: family need to care both for the elder, and for the member who lives close or feels the most able or strongest need to step up. Other contributions from siblings, or family planning, should be directed to make sure she is not taken for granted and ignored, as becomes a family, not a for profit corporation.
It is very hard to learn to ask others for help, but I find that when I'm in a culture where this is normal, I feel cared for - I'm now 73 and getting vulnerable myself. I have learned to be clever, and my work with elders and with my brother, has taught me how to set up my home for changes in agility - as I would suggest to the Harrison family whose father falls so often. Even just to have father over to visit - it is still worth adapting the home.
It is amazing how tiny bits of help, go a very long way, so people can help in multiple ways, at very brief times. Yes, we have to be real with parents, because nobody CAN do it all alone, nor should they be expected to. I just broke my ankle, and I'm learning to ask for help for me - it's actually mostly a bureaucratic task, which is easily overwhelming, but resting when tired, then making small choices, a plan emerges.
We should not think the only "solutions" are "all" of this, or "all" of that. If it's a nursing home, we should find one nearby, and make visits regular.
But we should, in my view of a decent world, make time to try to come up with some plan that involves us in a cheerful way - make time to do the numbers and explain our positions and our needs to family. It may take a few years to build up, but it's worth it.
Working from home is not ideal for me for several reasons. We have dialup Internet at home -- mainly because I am cheap and can live without cat videos (ha ha) But also because my ISP forbids using personal accounts for business reasons. Mom has no interest in learning the computer, and that's ok. When I get on the computer (for business, pleasure, job hunting....) Mom refers to it as "playing on the computer" (keep in mind I have a B.Comp.Sci and 15+ years experience in the field) and if I step away from it for anything longer than a bathroom break (e.g. long downloads) I am expected to power it off. I have to stop (and ideally power it down) for meals, bedtime, etc. work also provides a social need for me, to interact with other human beings and provide a routine to my day.
Larger, established organizations (e.g. universities) have huge vacation plans (5 weeks!) with flex time. You can take days or half days off here and there as needed -- assuming it won't interact with your work duties. Smaller companies -- not so flexible. Places think more quickly about needs for spouse and children, rather than parents. (hmm maybe I should marry my mom!)
When I had two part-time jobs simultaneously (a univ and a partner of the univ, neighboring offices) I told my bosses I wasn't working more than 40 hours a week total, and they were fine with that.
Some of the more progressive software companies are offering free meals, concierge services, and other perks. Hidden agenda: it's to keep you in the office as long as possible every day.
spend a few bucks and pay the college kid up the road a few dollars, maybe a nursing student. Really a teenager down the street to clean and do the easier tasks, while you work on the more difficult ones. I truly feel and have cared for my loved ones at home, that the time for them to leave the comfort of family and home is when they no longer recognize it.
I'm always saddened that while there are great benefits in some states, other states give little support. Good luck to you,
Carol
My mom lived in another state, so when she moved in with us and now in assisted living, none of her friends were, or are, available.
We also moved 7 years ago to another town. All of my friends now either work full-time out of the house or are full-time moms. No one but me is able to visit and take care of my mom's needs. Even though she is in assisted living, I am visiting every other day and on the off days shopping for the things she needs and wants.
My point is that most of us live in a very mobile society today. Kudos to you for having a close circle of friends that are able, and most importantly available, to help you. I don't think that I am in the minority in this situation.
My dad died in 2009 from ALZ. mom has Primary Progressive aphasia,with signs of dementia. It of course sucks. But we can't do anything more than we can do for mom/dad,I have 2 adult children @ home,they are my priority 1, mom is 2 I guess I find you and I at the bottom. You and I have to be assertive.
Your parents nest egg will likely need to fund their care for as long as it lasts and then they will go on Medicaid. You can start by going to your state's Web site and looking under aging services. There you will find contact information. Every state has some version of the Family Caregiver Support Program. This program gets federal funding, but is run by the states, so they are not all the same. You should get local help and support in this way. Eventually, their money will be "spent down" and their assets drained, and then they will need to go on Medicaid. It's sad to watch, but it's where life leads many people these days. You definitely can't do this alone.
Take care of yourself, too,
Carol