Watching your once mentally sharp parent decline before your eyes. The parent's uncontrollable anger and outbursts. The devastation of memory loss. Worrying that your parent will wander away from home and never come back. When you are taking care of a parent with Alzheimer's, you are trying to cope with your own grief over their illnesses, help them with their feelings of loss, keep them safe, make your immediate family reasonably content and work at your job. You are wearing out, but caregiver guilt won't let you say – enough!
Listen to Your Own Needs
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Most of us, when we have a vulnerable loved one, want to take care of them. We aren't excited about having strangers take over the care of our loved ones, and our loved ones normally aren't excited about that idea, either.
However, outside care eventually becomes a necessity for many. When we are talking about elder care, often people jump immediately to the "nursing home" solution, since in days past, that was pretty much the only choice people had once someone couldn't stay at home, or with family. Things have changed now, but that doesn't mean it is easy.
With more options for care comes more confusion. When is in-home help enough? Is assisted living the best option? And what about nursing homes? Are they the nightmares of the past?
That Promise You Made
Hindsight can make us pretty smart. Sometimes, when our parents are younger and healthier, we make promises: "I promise I'll never put you in a nursing home." We should not tell our parents we'll never put them in a nursing home, since we have no idea what the future will bring. Also, that promise just underscores their view of the old style nursing homes, which were truly depressing places.
Unfortunately, there are still areas of the country where nursing homes are far from excellent, and our whole nation has a long way to go before most homes are what they should be. But we are talking about your reality here. We are talking about what is happening right now.
You may have made a promise that you could need to break. If that's so, remember that by caring for your parent for as long as you have has honored the spirit of the promise (I snitched that phrase from a terrific hospice chaplain). The idea is that you've done all you can to keep your elders safe and to help them through some tough times. However, times have gotten tougher than you expected, and you must look for other options. That's okay.
Don't Make the Promise if You Haven't Already Done So
If you haven't made the fateful promise, but your parents want you to do so, simply say, "I love you very much and will do everything I can to take care of you. We don't know what the future holds, but I'll do my best, always, to care for you in the best way I can." Repeat as needed.
Back to Options
The first place I recommend people check for help is their state website. Since each state is different, it's hard to give one answer as to what help is available in your community. By going to your state Web site (just type in the state name and scroll down until you find the official site), you should find some help. If you type "aging" into the search box of your state site, you'll find your state's version of the National Family Caregiver Support Program (NFCSP). Click that link and check in with these people. They will know what your state and community have available. They will also offer emotional support.
Many states have some federally funded hours of in-home care that go to waste because people don't know about them. The NFCSP folks should be able to point you to the organization in your area that would administer this help.
Click on any site that looks useful under this state aging help category. You may find quite a lot of help – or not much.
In-home care agency care can be expensive, but it's flexible. You may find an agency that can help your loved one, at least for awhile so you have a break from constant care, and then you can look for more permanent help. The main idea is that you need to get some relief.
Assisted living centers often have memory units, which generally offer good care to folks with dementia who are not having a lot of other physical problems. Assisted living is expensive. Expect that most of your elder's money will go for their care, if they need outside help. Unless people are wealthy, long-term diseases like Alzheimer's can eat up most of your parents' assets. You'll have to accept that reality and so will they.
Your own health is expensive, too. If you get physically or mentally sick, you aren't going to be able to care for your loved ones well, if at all. You may have to explain this to your elders (and to yourself) repeatedly. But believe me, it's true. If you are coming to the end of your rope with caregiving, you need to get help. Guilt isn't an option. Your sense of guilt will only contribute to your parents' feeling of insecurity. So, please work on your own feelings about outside help. Think of this as giving more care, not about you caring less.
Assume as upbeat an attitude as you can, and start looking at assisted living facilities. Treat it as an adventure, even if your elders are complaining. Do your best to detach from their complaining and look anyway. Try to be cheerful but firm about any help you seek.
Nursing homes are for the sickest people. They, too, are expensive. Most people who spend a long time in a home end up spending all of their money and most of their other assets. They then go on Medicaid, which is the government help for the poor. A good nursing home should not give lesser care to someone on lower paying Medicaid than to someone who is on what they call "private pay."
When my loved ones moved to a local nursing home, I watched the staff closely. This was an exceptionally good home, to be sure, but I'll say that I never, ever saw any difference in care based on how the home got paid. Nursing homes are all supposed to be this way. If you see a home that discriminates, report this home to your state ombudsman.
Back to Your Own Needs
When you've had enough, you've had enough. No one who is burned out is able to do his or her best to care for another person. Don't let this happen to you. Get help before you are at the stage where your loved one needs more attention and help than you can give.
When caring for a parent with Alzheimer's becomes too much for you, you are at risk for depression and other health problems. You may even put your loved one at risk because you can't watch after him or her safely. Do it now before you completely break down. Do it for your family and yourself.