I started working with a great company that helps the disabled get medical equipment and had to resign due to missed days for appointments, call offs from caregiver, ER visits, urgent care and the list goes on. I just don't know what else to do. All the reviews I read from nursing homes and adult family homes qualified to care for her and accepts Medicaid...Horrendous. I dont know what to do anymore. I've cried so many tears of frustration and sadness I have none left. Any advice would be appreciated.
I've tried care managers, geriatric care managers, talked to nursing homes, home care agencies, adult family homes for everything from day centers to respite to full time caregivers. Nothing has worked longer than a few weeks for the last 5 years. Rinse, repeat. I'm so disgusted with this broken system. The state will pay upwards of 7 thousand a month for her to be in a poor performing home that has been sanctioned for bedsores, dehydration and the like but will not pay for an agency to give me a full time person at home. I'm just so tired. I keep praying, trying to be grateful for my blessings but I'm so angry at this point and it feels like it never stops no matter how hard I try. At the urgent care again due to her developing a knot on her back when her air matress pump died and waiting for the new one to arrive. Took her to her doctor who said watch it. Well it got bigger and I sent a pic after the SECOND visit to see him for the sore that started on her elbow after 24 hours with no air mattress and her leaning on her arm to get "comfy". She's bedridden and totally dependent, left side immobile. Guess, just guess where the elbow sore is??? And her neck is getting weaker after me reminding her like 100 times a day, no exaggeration to keep her head up and back. Tired... angry...and exhausted...
I read time and again 24/7/365 care but have come to the conclusion that is not possible, not even when they are home. Having someone awake and available 24/7/365 to help is far from 24/7/365 care. However, it is as good as it gets, unless you have millions of dollars to hire an entire staff, bed sitter, cook, housekeeper, runner, gardener, etc. Because it takes alot of people to ensure all the needs are dealt with.
I say that because I think there comes a time when it makes sense to stop sacrificing our own lives and wellbeing to hands on care of another.
My experience is that ratings on the internet tend to be wrong, 5 star dump, 2 star wonderland type of situation. You have to physically go, does it smell, is it clean, how do the patients act, are they relatively contented, is the staff fresh looking or wilted, what does the food look and taste like, what is the staff to patient ratio and anything else that is important to you. Also, visit several times and just drop in, they can showtime as well, so you want to see how things are morning, noon and night when they aren't putting on their best face. It is time consuming up front but will save time later.
One bad day does not make for overall unacceptable facility. We all have them and things happen suddenly with the aged and infirm, be gracious on those days and grateful for the good ones. Talk to other "visitors " at the facility, how do they feel about the care their loved one is getting.
You matter in this journey as much as your mom, please find a way to get her cared for so you can go back to being her daughter and maybe share some more good times or memories before her life is over and you are left a complete wreck from it all.
HUGS for all you do! She is blessed to have you for a daughter.
1. Find out if the facility is owned for profit (by a corporation) or not-for-profit. Not-for-profit facilities MAY have less staff turnover because they are less profit driven and less prone to make cuts in services, less likely to have overworked staff and be able to retain quality employees. The better staffed, the better paid, the better morale a place has and less turnover, the more likely the place will be a better functioning facility. Is the nursing staff friendly and receptive. The people your loved one will have a great deal of contact with are the Aides. I've seen places with good Aides (conscientious and friendly) and bad Aides (rude, rough). Check Medicare ratings of the facility. Every facility has a yearly inspection and the results are public (online) or you can ask to see them at the facility (should be readily available).
2. If you do decide that you can no longer hold up under the stress of caregiving a dependent parent (which is a monumental task, by the way) and are considering placement in a nursing home ... my advice is to be a very visible and involved family member. Get to know the staff and the Aides and try to develop a good rapport. Demonstrate to them that you are involved and watching the care. It's only human nature for staff to put their best foot forward if family is closely involved in the care. This doesn't mean criticizing or nit-picking, but working constructively with staff to make things better and also recognizing and expressing appreciation where your parent is getting good care and attention from staff. Sometimes having someone else care for a parent will free you to have the good relationship with your parent in their remaining years. I've seen many family members themselves become part of the nursing community when they visit their loved ones -- they also get to know other residents and their families which lends to a sense of community. I agree that one has to be very careful in placing a parent in a nursing home, especially a person who cannot speak for themselves. The good places are there, and though they're not perfect because (as someone said in a previous post -- the parent will have the same physical issues in a nursing home as in a home, such as potential for skin breakdown, immobility, etc), one might be able to find a more workable situation for you and her. Caregiver health is often a casualty of the enormous stresses on you. Think about your health and wellbeing as well.
Whatever you decide, I wish you the best.