So I recently learned that my dad has a "mass" on his lungs that his doctor fears would be dangerous to diagnose without killing him -- but it's a safe assumption that it is cancerous.
He was placed on 24 hour oxygen Friday, and it appears that he is going to need 24 hour care in order to manage it.
He's legally blind and has dementia. I am not sure his IL facility will even let him stay with the 24 oxygen, so I'm faced with a MOUNTAIN of dilemmas (in addition to determining if I should sign DNR papers)
I moved him out of IL for a short time in an effort to save money. We tried a small apartment and part time overnight nurses while I unsuccessfully tried to take care of him about 4 days a week. We both HATED it, and it wasn't much less expensive than putting him back in IL (except for the priceless guilt of hating every minute of caregiving--I'm an awful person)
So, I put him back into the private pay only facility he loved but barely uses due to going to an adult daycare facility Monday through Friday. We looked at other places that were about 1/2 the cost, but he HATED them.
So... with paying someone to transport him back and forth to the Adult Day Center and in-house companions morning and night to help administer medicines and the IL costs alone, his VA benefits (though great) aren't enough to cover his care. I have the burden of trying to make up the difference.
PRE SICKNESS: I had a cushy six figure job that required extensive travel. I had a home, a fancy car, and freedom. Even after a layoff, I still had priceless freedom.
POST SICKNESS: The house foreclosed. I sold the car BEFORE they repossessed it. I have had to work 2 - 3 jobs at a time to make a FRACTION of what I made before all with the need to take care of Dad.
I've had to drag him to work with me when the Adult Day Center is closed (I hate holiday seasons because of this) or try to find care because he hates to be alone which is expensive... I've cycled through several less-than-stellar jobs because I've become a total B**** because I'm stressed all the time.
I hate having to work multiple jobs only to barely make my ends meet (I sleep on an air mattress while Dad lives in luxury) only to get MULTIPLE phone calls from Dad every night because he's "afraid". He has panic attacks.... I have to be out of work for multiple doctor's appointments, I have to leave work when he's not feeling well... I suffer the mental / emotional / social ramifications of a lack of sleep (and a helluva lot of resentment over this whole thing)... I get fired.
With the addition of the oxygen, I really don't see a reasonable, affordable alternative. If IL won't let him stay there, I could move him to the full Assisted side, but there's no way we can afford to have him in a private pay AL facility AND Adult Day Care (which he loves).
The only alternative (MUCH to my dismay) is to move to share a two bedroom apartment (flat / one level) with him and take care of him myself.
Feel free to shoot me for this, but I don't WANT to do it. I LIKED my job. I liked hiking on Sundays and working out 4 days a week (25 pounds ago). I miss my friends that slowly dwindled away because I couldn't meet for brunch or happy hours. Being hand cuffed to a cranky senior doesn't do much for a sex life.
Making this choice would be financial and would mean: I will MELT from his constant 85 degree temperature requirement (he doesn't like electric blankets or space heaters - may be an oxygen hazard). What semblance of life I try to have now would be GONE.
Much to my Dismay I'm tired of getting fired. I want my old life back. Maybe my family's right. As I type this it does sound pretty selfish... SIGH.
What your father gets in terms of care is guided by a needs assessment and his resources, which includes Medicaid. It sounds as though he would qualify for Hospice, and perhaps a nursing home. Talk to your area agency on aging and get an assessment of his needs.
Your family says that you're selfish? Are they providing care? Funds? No, I thought not.
Read up on FOG...Fear, Obligation and Guilt. And get back to work.
Mother Teresa had a whole convent of devoted sisters who helped her and each other care for people who were dying but largely grateful to receive care, and it WAS her full time vocation. Either you can or you can not put your life on hold and be unemployed for as long as your dad lives from a financial, practical perspective, AND from a practical "can I physically do this" perspective...I would personally not last long in an 85 degrees indoor environment and if that's what your dad needs and you know you can't survive it then you should not even try it.
But let's just say for the sake of argument that it is something within your physical and financial capability to do. You do not want to do it. You would do it anyways just to avoid feeling selfish. That's why you are writing to us. Is it right or rational for any parent to demand their child sacrifice their future and their well being, to essentially eat them alive? To destroy the adult that they once successfully launched into independence, maybe with great sacrifice and struggle not too many years go? If they could live in such a way that they could receive help and companionship from their children without absolutely consuming them and making them miserable, it would be one thing, and in the world outside AgingCare that actually happens more often than not, but your Dad is too fearful and too cognitively challenged to see what is happening to you. If he could see it, he might care, or if he was not a very good parent, if he was narcissistic from the beginning, maybe he would not.
In either event, I'm going to quote something I read in advice column recently, I think it was Carolyn Hax but I'm not sure. "You are not required to set yourself on fire to keep other people warm." Do what you can to see that your dad has the care he needs. Oh wait, you've been doing that all along..and then some. Repeat: do what you can to make sure your dad has the care he needs - not necessarily the care he wants or thinks he wants, especially if that would be care provided 100% by you at the cost of your entire life, either metaphorically or literally.
If you want to make sure you are there for him when he passes, stay in the same town and don't move away and stay on top of how he is doing. There may come a time when he is on hospice and it is getting close and you do take time off work, but then it will be because you want to and need to. Employers don't typically fire people for that sort of thing, but they won't realistically be able to keep you on if you will continually and unpredictable have to drop everything for weekly or more frequent emergencies with no end in sight. You do not need to end up regretting what you did or did not do in these days once all is said and done. You have already done more and given up more than is really reasonable.
With the possible cancer, the dementia, and the blindness your dad doesn't sound like a candidate for Assisted Living much less Independent Living. Is a nursing home one of the decisions you are mulling over right now? If you decide on a nursing home your dad could apply for Medicaid and Medicaid would pay for it. Actually, YOU apply on your dad's behalf and he signs on the dotted lines. I don't know if your dad would be eligible but it's worth looking into.
With your dad in a nursing home he would get the care he needs around the clock and you could have your life back. Don't get me wrong, caregiving doesn't end when our parent goes into a nursing home but it's easier than caring for our parents ourselves. You'd still be an important part of his care.
Don't quit your job. It would be a colossal mistake. You'd leave your job to care for your dad full-time, the business world would go on without you and one day when your dad passes away you'll find yourself wondering what to do next. THAT is stressful.
And NO, DO NOT QUIT YOUR JOB. Never. Nana. Nope. And you should NOT be paying for your father's care.
I remember one time my Dad asked me to retire from my work, so I asked him if he had quit his job to take care of his parents or Mom's parents. Of course, I knew his answer was "no", and he never asked me again. My parents could have easily afford to pay for care from their own pockets, they just didn't want to.
Don't give Dad any choices, pick out a facility that would work best for him, have him self-pay until the funds run out then go onto Medicaid [make sure the facility will take Medicaid]. With dementia, your Dad might not fully understand the consequences of what is going on, money wise.
I had lost a job that I had for over 20 some years because of all the time I took off taking my parents to doctor appointments, errands, grocery shopping, etc. and for me being sick due to the lack of sleep worrying about them living alone. They refused to downsize and moved into something elder safe. Eventually headquarters decided my job was no longer needed as it was being shared by other employees. Thanks, folks, I lost a lot of great benefits because of their decisions :(
NOTE NEEDS.... wants are a luxury and if he wants then he better be able to pay or he simply doesn't get. It is NOT your role to pay for his care in the twilight of his life and leave yourself with nothing for you. Even if the do-gooders might suggest you are selfish then just tell them ....OK you do it then (on the same amount of income I get for doing the job) and watch them all take a huge step back. It is easy to criticise, it is easy to feel guilt, it is far harder to say enough is enough i have done all I can and to quote Popeye I cain't stands it no more.
As for Medicaid, Dad doesn't qualify because he currently HAS money. The VA covers him well, but his WANTS are expensive. I was the child that got trapped and feel a relentless obligation to take care of him. I did it since I was six (and patched up a few bloody noses from the wives he beat).
I go to therapy when I can (have been since brother's death). I just wish I could grow a backbone.
Wait... I did that (see Easter Fight Post) and feel awful.
Sometimes I want to give the POA to someone else so they could see/feel what it's really like to do this day in and day out.
I think I'm just tired and emotional.
See All Answers