Can't Take Being an Alzheimer's Caregiver Anymore?

Thank you Carol for this great article. I appreciate it and I'm sure I speak for many.

This is a good article, however you left out another care option; Adult Day Services. Adult Day programs allow your loved one to spend the day in a safe enviroment while enjoying socialization and planned activities. Some of the programs offer health monitoring. To find out more information about adult day service programs go to the National Adult Day Services Association website to find out more information. Many times, an adult day service program is the most affordable option in long term care.

Carol----Great article. My sister and I are caring for our mother, for now. We would have died long ago if not for elder day care at a local nursing home. And our life saver is respite care for two or three days at a time to give us substantial breaks.

I am so grateful for qualified, caring people who feel called to elder care and especially Alzheimer's people. These support professionals have saved our lives.

---Sandy

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

Carol, as adults I do think we have the right to change our minds even when it comes to promising someone we would never put them in a nursing home because when you reach the point where such care gets over your head, you almost must change your mind about your promise or through yourself, marriage if married, job, etc. all under the bus.

Sever dementia and especially Alzheimer's Disease is a tsunami that the USA is just beginning to get a glimpse of right now. When this hits with full force, wow! Because the disease is so long term, emotional, mental, physical, familial, spiritual, every aspect of our humanity is called to the forefront to sometimes just survive the awful long term effects of this disease. Care for the caregivers is the utmost importance. I can't emphasize this enough. My sister and I are doing this, for now, and it's the hardest thing I've ever done in my life.

The closest job to this one, if one chooses to care for a family member 24/7, is a soldier on the battle field in a fox hole. Stress management, self care, in every aspect is so vitally important, that I can't emphasize this enough.

And never for a moment, a nanosecond, feel guilty about getting support with in home care, respite care, elder day care. We are using all of these and we're still barely surviving.

I would suggest reading don Miguel Ruiz's book "The Four Agreements". You will find these provide you with emotional and spiritual survival skills you will need. Really! God bless all of you attempting to care for someone with Alzheimer's. God bless you deeply.

thanks carol,last statement in your article really hit home for me,it's time,I know it now I have to apply it.

I have been caregiving for my family for 26 years. Currently I am caring for the last member of our family, my Mother, who has had Alzheimer Disease for about 10 years. Her disease is progressing faster now and she has lost the ability to use common sense, losing appetite, refuses to have any one stay with her in her home 24/7. She is not willing to transition into assisted living in a AD facility. She resents me trying to do what is right for her and isn't willing to participate in role reversal of the mother daughter relationship. She accuses me of lying about conditions I correct in the home. I am worried about her safety. She has lost the ability to operate the washing machine, dish washer, central air conditioning any modern conveniences. But is steadfast about being in charge of her home. It is a battle I am tired of fighting in the war to cargive for her.

I have tried the free day care offered by the states council on aging. She wouldn't go unless I accompanied her for her first visit, but has refused to return on her own. They even have a bus that picks the patients up at their home for half a day.

I have evolved with the progression of the disease and adapted her living arrangements until there is nothing left to change so she can be independent. She has an automatic timed pilled dispenser with an alarm for her four doses each day that I prepare weekly. I have purchased an EMS bracelet that she wears all the time so she can be located if she wonders off and it is monitored 24/7.

I have reached the end of my rope. She refuses to wear her glasses so she can see, will not put a sweater on when she is cold. Accuses me of lying about her to put her away. Whatever that means. I am the only sibling that lives locally. Everyone else lives a considerable distance from her home.

What do I do when she gets to the point she needs 24/7 care and will not allow anyone to stay in her home and refuses to willing move to assisted living?

Wow, knownunknowns----You are facing a really difficult crossroads in your mother's journey and yours. You've gone above and beyond on adapting her home for her independent living. Her care is clearly progressing into needing someone to keep an eye on her and to assist her with the basics all the time.

As a progression to full time care, have you used elder day care? The reason I ask is that my sister and I started using this service over a year ago. There are days Mom doesn't want to stay but one of the staff will distract her so we can leave. Then there are those days when we pick her up that she doesn't want to come home with us. And again, a staff person will assist us in getting her on her feet.

We use elder day care almost five days a week for about six hours a day. And once a month we use over-night respite care (at another facility) for two to five days. This gives us a much needed break. And these service are beginning to acclimate her to eventual full time, "nursing home" or healthcare center living.

The key for us is that she has connected with different staff at both of our facilities that we have used for over a year. She needs to feel safe, supported, and cared for and shopping for the best facilities makes your job a whole lot easier when dropping her off for care.

This may not help at all. . . if this info doesn't resonate for you, let it go. This just may be me needing to process where I am with my mom.

God bless you. . . and as I mentioned earlier in another post, taking care of you is vital to this whole process. If this isn't happening, you're already at a huge deficit.

Again, God bless!

Knownunknowns, it sounds like you have done an excellent job of enabling your mother to retain her independence as long as humanly possible. Congratulations! Job well done! But now you've reached a point where continued independence is not possible. That is very sad. Have the other caregiving situations involved dementia? That puts a whole different spin on things, doesn't it?

Even if Mother is not willing/able to participate in the role reversal, it has happened. You are the caregiver; she is the dependent. Just as she wouldn't have allowed you to play in the street just because you insisted that is what you wanted to do, you can't allow her to continue to live alone. But that analogy is easier to say than to apply, I'm afraid. When the dependent weighs as much as you do, has a strong will, and you want to avoid physical force at all costs, it is not as easy as picking up a screaming child and carrying her into the house.

Perhaps it is time to bring in an outsider for reinforcement. Do you have a case manager or social worker involved at all? Someone who can objectively assess the situation and say, these steps are necessary for your safety, Mrs. Mother?

I use elder day services (the van just picked my husband up) and agree with Styg53 about the benefits. Perhaps you can try that again. Take Mother rather than using the bus service, at least for several times.

Good luck to you on this difficult leg of the journey.