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My Mom died of complications due to Alzheimer's Disease several months ago so I am now out of the loop, so to speak. But I do remember the full time, never ending, all encompassing and the often nearly overwhelming weight of responsibilities. My heart does indeed go out to each of you.
Early on I came to a conclusion that was to become perhaps the most important mainstay in my ability to provide an ongoing, positive care environment for Mom and my Step Dad and keep my willingness and sanity above board. That conclusion was to realize that I had in a very real sense become the adult while my Mom became the child. Far, far, far, FAR more importantly than that realization though, was to actually put that realization into hour by hour practice. To 'take the bull by the horns'.
By fully accepting the complete responsibility for their lives I was able to take that leadership role into virtually every aspect of their lives necessary to accomplish the goals of maintaining their health and happiness - and my sanity. After all, to the degree my sanity would waver, so too the care I was able to provide.
While it was important not to disrupt the habitual aspects of their lives, TV time and stations, times of nourishment, bed time, wake up time, etc., I was able to forecast well in advance and coordinate two health related appointments, amusement outings, personal time away, etc. in a format which allowed me to remain proactive in life rather than day to day living under the burden of playing catch-up to the immediate needs that arose. (There is enough of that built into the life of a Care Giver, anyway.)
With respect to personal time, don't misunderstand. My brother gave me a one week break during the course of the entire 5.5 years I provided full time care. And that week only because of the intimidation brought forth by my sister, who, incidentally, provided me only two, one week breaks during that same period. So... I well understand the difficulties in counting on others for support. Often, a Care Giver must initiate whatever it takes in order to capture their own personal time.
As a result of having no help, I was able to ensure my personal time largely because I created a 'hidden apartment' of sorts in the garage, installed a surveillance system with cameras in the rooms typically used by my parents and while always keeping an eye on them was at the same time necessarily somewhat removed. Though I'd make my presence known every hour or two, in that I was 'far' removed, I was able to initiate and develop personal challenges in reading and writing because therein were the principles goals I'd had that had been previously shelved. Thus, I was able to receive a sense of personal enjoyment as well as deem my life progressing in at least those two arenas of personal choice.
Make sure you are able to create some mental and emotional distance and by so doing pursue to the degree you are able the beginnings of a long term future for yourselves while at the same time not putting yourselves into a position wherein, as described by PDdaughter, the ever present F.O.G.(s) might get the best of you. By the way, often much, much moreso than those we care for, the F.O.G(s) are often creations of our own mind and emotions. (We have to be careful not to initiate things which bring forth any aspect of self destruction.)
Perhaps the above will provide you thoughts of considerations on how you, too, might be able to establish a foothold from which you'll be able to best begin your immediate future thereby protecting your sanity while at the same time properly caring for your loved ones.
V
After his continued deterioration of his health and mobility, I finally had to put my foot down. I found an AWESOME AL/aging in place home only 5 miles away, where he has a private room, the company of his 2 pet cats, and a very homelike atmosphere where the owners live on site in another house and they actually have her dad there and they have only 10 total residents with a wonderful staff. Either he goes there and gets the help he needs to IMPROVE (as laying in bed all day does nothing but cause more problems) or I am done with him as I will not stand by and watch himself destruct. Talk about boundaries. It was just too much strain on me mentally, knowing he was always alone other than nursing visits and his helper there a couple hours a day to change him, fix meals, etc. His abusive attitude was not good for him or me, as he resisted everything I tried to do to help him.
Everyone compares that the relationship changes as our parents age; we become the parents and they are the children. When we were kids, do you ever remember getting to do whatever you want and live however you wanted to? Of course not. Our parents very often had to tell us "no." They did that because they love us and they want to protect us. I think as caregivers, because of FOGs, we don't feel right telling our parents "no." I would not be honoring my father by letting him continue to live in a very unsuitable and dangerous situation just because "that was what he wanted." This may not sound very popular.
Unfortunately, my husband and my dad do not like each other so dad living with us is not an option. I love my dad but I am not willing to sacrifice my marriage. But I will ensure that he gets the care he needs to IMPROVE and be safe.
Carol - Let the AL do their job; this will free up time to do the other things that you mentioned that they need you for. If your parents are nasty when you visit, leave. Honestly. I have had to do that more than once, even being told "don't let the door slam you in the a$$ as you leave." You allow how you are treated. You can say to your dad "Dad, you have the control here. If you speak to me like this, I will leave. If you are civil, I will stay. It is up to you."
PDdaughter - If your parents refuse to have other helpers (errand runners, cooks, etc.) then you have to just set it up and do it. Find a reputable company with refs, explain your situation, and they can work with you. If your parents pitch a fit, let them. Just tell them this is how it is going to be. Just like they did with you when you were a child and pitched a fit. If they won't pay, then call a social worker or adult protective services to assist you in convincing them that you simply cannot continue doing every single thing as it is impossible for you. You might even schedule a mental compentancy exam through their doctor which can help as well. I am not saying don't tend to them, but you have to make a strategy to wean you from them. Especially since their attitude is so "challenging."
Just a few ideas as I was in the same boat. You have to put your foot down and let them know that you mean business. These are just my opinions. Good luck and keep posting.
You set boundaries by choosing what you will and will not allow in your life like verbal and physical abuse. Seems to me that he's trained you to bow down in fear of him as if you were still a little girl and not his grown daughter. Two books I would recommend. Boundaries in Marriage which has a chapter in dealing with aging parents. Emotional Blackmail by Susan Forward. Are you the one with Durable POA and Medical POA? Could a CPA do their taxes for them like I have to do my mom and step-dad's? Have you asked the private caregiver help and or family members who live in town to help with these prescription forms. I would think prescriptions and filing them with the proper insurance would get done by the assisted living staff. They do at my mother's nursing home. It is very easy to get into a deficit emotional state where we value ourselves according to how others treat us, i.e. if others abuse us, it is easy to conclude that we do not deserve to take care of ourselves and feel very guilty if we do. No matter how anyone treats you, you are a valuable human being. Take care. I hope the weight can get spread around.
Do you know why it's not a good idea to feed the dog from your plate? ... His idea of a good meal is what you're having, grows to expect it, and throws a tantrum when the begging and sad puppy eyes don't work anymore. ... No, I'm not saying your Dad is a dog.
There are three things you can start working on: (1) spell out to your folks the days and length of your visits (3x/week is more than enough); (2) when Dad becomes verbally abusive over the phone tell him you're going to hang up. If he's still nasty, do it. If he calls back ranting and raving, hang up again and put the voice-mail on. If he acts up during your visits, make him an offer he can't refuse. Either tone it down or you'll only come by on Sunday afternoons for one hour; and (3) Whenever possible, complete all that paperwork at the AL -- where the staff can assist you instead of taking it home. Also, sort them out by "EARTH SHAKING" and "CAN WAIT" and schedule paperwork time accordingly.
People disrespect you because you let them, so make a policy of not taking s__t from anybody; especially your parents. Time is a luxury you don't have much of. Manage your time in such a way that you get a chance to have a life that actually works and keeps you sane.
Good luck my friend.
-- ED
Vernon and OnlyKid, I am very appreciative of your responses, the insightful sharing of your own experiences and your investment of time to write, thereby sharing with me/us your wisdom and, in your case, Vernon, your caregiving creativity. I have carefully read everyone's responses and, in particular the responses directed specifically towards me, and am taking it all to heart as I figure out how to move forward with my current situation. Thank you.
BTW, who has durable and medical POA over your parents?
Roly