Alzheimer's Caregiver Burnout

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You watch your once mentally sharp parent decline before your eyes. Their uncontrollable anger and outbursts, the devastation of memory loss, and the worry that your parent will wander away from home and never come back are all overwhelming. When you are taking care of a parent with Alzheimer's disease (AD), you are trying to cope with your own grief over their illness, help them with their feelings of loss, keep them safe, make your immediate family reasonably content and work at your job. You may be wearing out, but caregiver guilt just will not let you say, "enough!"

Listen to Your Own Needs

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. We have more options, but that does not mean it is easy to accept them.

With more options for care comes more confusion. When is in-home help enough? Is assisted living the best option? What about nursing homes? Have they shed their bad reputations? Have new and increasing needs made them better or worse?

That Promise You Made

Hindsight can make us pretty smart. Sometimes, when our parents are younger and healthier, we make promises: "I'll never put you in a nursing home." We should not tell our parents this, 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. So much has changes in long-term care facilities in recent decades.

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. However, we are talking about your reality here. We are talking about what is happening right now.

You may have made a promise that you might 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 your original promise. The idea is that you have 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. This is okay.

Do Not Make the Promise if You Haven't Already Done So

If you have not made this 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." They may continue to pester you, but repeat this 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. Some states and communities offer an abundance of resources and information, while others have not been updated regularly in years.

In-home care can be expensive, but it is 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 can eat up most of your parents' assets. You will have to accept that reality and so will they.

Your own health is expensive, too. If you get physically or mentally sick, you are not 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 is not 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. At that time, they usually go on Medicaid, which is the government's program for helping 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 will 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 have had enough, you have had enough. No one who is burned out is able to do his or her best to care for another person. Do not 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 cannot watch after him or her safely. Do it now before you completely break down. Do it for your family and yourself.

There is no shame in seeking help, nor should there be guilt. Seeking and providing the best care for your aging parents takes a team. You do not have to be the sole person responsible for meeting for every need.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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26 Comments

Dean, call Social Services in your county and ask for a needs assessment. The social worker who comes out will know of resources in your area. If Grandma will be best served by being in a nursing home, the social worker can help you figure out how to pay for it, and if that means Medicaid, can help you get started on the application.

You have given your grandmother four years of staying in her home, which she couldn't have done without you. That is a fantastic gift and you can be proud. Now it is time to come up with another solution.
Wow we are dealing with this right now she has alzheimers dementia and severe alcoholism and prescription drug prob. she's bipolare and manic depressive as well.....Not good combo we had the hardest time getting anyone to diagnose she would fall and hurt herself and the hosp. would send her to nursing home for rehab. but would always send her home even tho we would beg them to keep her she was a danger to herself......It took us right at a year to get all her med records together request it all.....Dr.'s ~ Rehab facilities~ home health care staff if she had them~testimony from anyone in family or neighbors that have experienced her issues first hand~and cover your butt if you are primary care person for her~ My mother in law when we finally found her assisted living place beautiful too she flipped out and called the police and adult protective services and told them we were going to take her against her will there and dump her and we wouldn't give her her debit card and check book and we stole her car......we would of never done such a thing~Adult Protective Service if they are ever called will stalk you and make you miserable....My advice is to document and copy everything and I mean everything keep reciepts if you spend any of her money paying bills or running errands for her......I accumulated 2 3 ring binders of information from her home and put them in clear protective paper covers in date order.....then have her put in hospital for her meds to be evaluated.....It took me forever but it only takes one person to really listen to YOU beg them to listen to you or look at your documentation of her actions from leaving stove on ~ (she opened the back door to let dogs out and never shut it in winter and got very cold yet she forgot she had a heater and turned on all the burners one which she was boiling eggs she fell asleep and was woke up to exploding eggs all over ceiling) If she has ever fallen or gone somewhere and forgot where she was.....or keep all stuff from home health care providers talk to anyone that deals with her personally on day to day basis or anyone whom has concerns.....you will eventually find the one person to listen or read the documentation ~NOTE if they try to send them home again....and they will you can refuse to pick her up tell them she is not safe and noone can watch her 24/7 and she needs 24/7 they have NO CHOICE but to place her in a long term facility....like my mother in law ~ found a sweet lady at the hospiital FINALLY by the grace of GOD pulled all her doctors together and they consulted one another and all agreed she needed long term care where she now safely resides permanently at the VA Hospital. It's for her own good and yours as well you may even contact Adult protective service with your info and see if they can help it's better they get a call from you than her making it sound like you are mean to her or you take her money or you are neglagent or don't care.....Trust me this was the hardest thing we have ever done it's ...well very trying...I know she has rights and she will tell you that but so do you I live in very small Elephant Butte NM where it was easy to get all DR together I hope and wish you the best of luck....right when you think you can't take it another minute you will find that one angel of a person who really feels your story and it willl work out it will.....Good luck...pray pray pray...I will be okay

hay Guys, I need some Advice. Im 22 and taking care of my 86 grandmother who is suffering from Alzheimer's for the last 4 years. Its gotten near Impossible the last few wks and feel Like i am not coping too well. We dont have a family that supports us its just really me and her. I have a carer to come in and do her Personal care but she doesnt like strangers so most days Im doing that too. My Question is if I do feel like I cant cope Where do I go ! Like I mean Shes turning against and can be quiet aggressive towards me, its been 4 yrs Ive nothing left in me. I really feel she needs 24 hour care soon or im going to have a breakdown.