It's soooooooooooo expensive . I've found a very nice caregiver but there is no way when my almost 87 year old mother with alzheimers will be able to afford 8 hour or 12 hr a day care and she is not easy to deal with if any thing changes or it isn't her way. I wish it was a story book, honestly this older generation expects their children to step up and care for them as if we lived near t door and have resources and no issues of our own . For now i say "she's ok at home until she's not".

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Cetude, I read the end of your post with tears in my eyes. I too cared for my mother at home full time for almost 6 years giving her the most loving care possible despite her Alzheimer's and Parkinson's and I also have struggled with the aftermath and being emotionally crippled and having trouble functioning. I did find grief counseling in the form of Grief Share ( https://www.griefshare.org/ ) to be of help. But without question my ability to function is far less than it was while I was caring for her. A good friend of the family told me that I had been running on adrenaline for almost 6 years and now I am not and I am paying the price for what that did to me physically and emotionally. I hope you know that God knows what you did and the love you showed your mother and He will bless you mightly for that. You are in my prayers. Take care. Ron B

Considering I took care of my mom for 10 years, the last five required around-the-clock supervision, she died age 90 and had the best care imaginable. The feeding tube kept her from dying of dehydration, which without it is a slow death taking about 2 weeks. Mom was healthy -- brain gone -- but physically healthy until liver tumors caused massive liver failure and death, but she died peacefully and never required narcotics--at age 90 and 3 months. I managed any possible discomfort and anxiety (last days) with Benadryl, which worked extremely well for her and would work all day! She was bedridden only the last 3 months of her life. Before that she was ambulatory because I kept her going.

Now I have to live with the aftermath of caregiving and I lost myself and cannot function without mom. So now I'm an emotional cripple.

My sister was abused by a CNA in a SNF! How do you prevent that with in home care as well

I am an advocate of home care rather than a nursing home the paramount reason is one on one management of a patient. With a family caregiver plus the assistance of a critical care visiting nurse to keep monitoring the patient's vitals this process would offer a more positive outcome to sustain patients life longer. A new CMS protocol would be required, however, this development would eliminate the high cost of hospice management and funding would be directed to off set the nursing fees. The theme, keep the patient alive, pain free, till they die. The original intent of hospice.

New Yorker, I'm so sorry that things haven't improved with your in-home care. I've heard versions of your story so often. One woman I know lives in Canada and she has the same issue.

You are right - we are all growing older no matter our age and we will face this issue for ourselves. New oversight and funding are going to be essential to solve this problem.

None of that helps you now with your husband, though. It angers me that people have to fight for decent care for their loved ones. I know that I'm fortunate in my community to have in-home care and nursing homes with high standards (not perfect, of course, but in general very good). Even then we had some issues with my uncle's caregivers and my mother-in-law's caregivers. In the end, we found three at once agency that, in rotation, worked well for my uncle. It's sad that this is the exception. Still, this can change. I see a future with less funding for elder care of all types just as more is going to be needed for even basic care. It's very scary.

Home Instead has a franchise setup so quality is likely to vary some, but they do have a good reputation. That's one of the companies that I suggest when people ask. Sadly, there are no guarantees.

My heart goes out to you. I wish that I could magically help you in this situation every day - and holidays are always the worst no matter where we live. You have our thoughts and sympathy even if we can't fix your problem. I'm glad that you can at least express your frustration.

Keep us posted when you can,
Carol

Newyorker, so sorry to read you are having so many issues with caregiving agencies. If you are able to do so, change Agencies until you find one that has experienced and hard working caregivers. Sometimes one has to pay more to get a higher quality workforce, thus the Agency pays their employees a decent salary plus benefits.

Please note, not to defend Agencies, but running a really good Agency can be expensive. There is payroll to pay.... licensing fees... bonding fee.... workman comp insurance for the employees.... rent on the office, plus all overhead costs.... and salary for the office employees. Cost of background and credit checks of new caregivers... continuing education.... making sure all caregivers have their flu shots and passed their TB test, and any other required medical test. Plus most Agencies are open 24 hours a day, or at least one employee is on call all through the night. Every week I got an e-mail with an attached schedule of the names of the caregivers and what day and time they were to be with my Dad.

The Agency I used for my Dad, if the winter weather wasn't the best in our area, the Agency had their own 4-wheel drive vehicles to help those caregivers get to and from their clients.

Hope you can find an agency that works out well for you and your husband.

Just in case anyone cares, the situation with my husband has not changed one bit . The agency sent a person to shadow our regular aide and they spoke in loud outdoor voices in a language we do not know just three feet from my husband . He became frightened and yelled over and over"speak to me so I can understand or get out." An agency official came to our home unannounced at lunch time informing us that my husbands condition obviously has worsened and we are difficult to deal with. She upset him so much that he cried all day and could not eat. Well perhaps we are difficult to understand. We worked hard all our lives, always paid our bills, and always welcomed people from many lands into our home. But we do expect a measure of respect. These people all arrived unannounced and expect us to conform to their wishes. It used to be that a man's home was his castle, however humble that home was. Now it appears that once you are old and ill you have no rights. You should see how bruised my husband's buttocks is because an aide was sent to shower him and kept pushing him back against the shower wall where the grab bars and faucets and shower head were. And guess what nobody cares. We were told there was a miscommunication between him and the aide. Wake up America. Either you will die young or you, too, will get old. And in spite of all the healthy things you do to stay healthy, remember you have not arrived yet. You might find yourself unhealthy and old and at the mercy of people who only care about money.

It is wonderful to know that sometimes home care works out well, as with freqflyer. I think that was is so troubling is that no one cares or does anything about all the money grabbers who take the money and provide little to no help, or are actually abusive to clients. There really is no where else to turn.

Ron2375, you were curious about the author, Carol Bradley Bursack, background. https://www.agingcare.com/Expert/Carol-Bradley-Bursack

About a year ago I hired caregivers from Home Instead and had excellent luck with them. My Dad [94] was just widowed and needed help around the house plus he was a fall risk. The secret is finding the right match, a caregiver that had a lot in common with my Dad to get conversations going, who had a sense of humor, and someone that had little problem with encouraging Dad to get up to walk, etc.

My Dad had 3 shifts of caregivers. The caregivers made breakfast, lunch and dinner, did light housekeeping, changed the bedding/towels, did the laundry, one even went outside with Dad and helped him do yard work. Even drove him to his doctor appointments. Ok, I know I am sounding like a commercial.

Eventually my Dad decided he no longer wanted to live in the house that he and my late Mom had shared for decades, he was ready to move to a senior facility. Dad was quite pleased with the senior facility, especially since he was able to bring two of his favorite caregivers who helped him adjust to his new living quarters. Dad didn't need 24 hour caregivers as the senior facility has their own Staff. Since Dad's budget could handle the caregivers, I kept both on even when Dad recently moved over to Memory Care, but less hours. These great caregivers give Dad a routine which is so very important when one has dementia. And it gives me sense of security.

I totally agree with the comments written so far about this article. The author either lives in a paradise where caregivers and agencies actually care or she is totally ignorant of what things are like in the real world or she is just a shrill for the care giving agencies and does not care about the struggles we caregivers face in the real world.

I hired caregivers through home care agencies to help me care for my elderly mother for a period of 4.5 years. My mother, who passed away recently at age 89, had Alzheimer's and Parkinson's. Even so she was able to keep her sweet personality and ability to communicate almost to the end. I say this to indicate that she was not a person who tried to hit caregivers, or spit on them or curse at them, etc., which happens in some cases with Alzheimer's and Dementia, and thus from that respect was easy and a joy to care for -- of course the physical care was not easy but we got equipment to make it as easy as possible -- wheelchair with lifting arms to make it as easy as possible to transfer to/from, padded commode, sit-to-stand lift, electric Hoyer lift with Hygiene sling which greatly eases toileting along with transfer procedures, both one and two person, which were verified by a nurse and physical therapist as being safe for the caregiver and my mom.

In general the care giving agencies paid minimum wage and provided no training to the caregivers. We were sent caregivers who I had to teach how to cook, how to do simple "assist to stand - pivot - assist to sit" transfer procedures and had to train most of them how to use the Hoyer lift when mom reached the point at the end where that was necessary. For many of the caregivers I had to assist and keep a close eye on them or else they would slack off and do nothing for us while being on their phone, etc. I dealt with caregivers not showing up for work and not calling their office to tell them they would not be going to our place that day and then I would have to call the office to inform them and ask for a fill-in which of course would be someone who had not been at our place before, and would never be there again, and I would have to train them and assist them for that day -- at one point this happened 6 times in a 6 week period. Even most of the good caregivers would have issues and miss shifts due to their car breaking down, running out of gas on the freeway, getting into a fender bender, not having their babysitter show up and having their children get ill and having to take them to the emergency room, staying a couple of days longer than planned on a vacation and not telling the office, etc. We lost multiple good caregivers when their family members fell ill and they had to stop working to care for them full time. Some of the caregivers just could not learn -- multiple ones had no idea of how to do safe transfers and even after being shown how to do so day after day after day still could not do it. Some caregivers where just careless like the one who improperly cleaned my mother and wiped poop into her private areas or the one who wanted to put the briefs on backwards and argued with me for days about this. And yes, we had to pay for this ourselves using monies that my parents worked very, very hard to earn -- what an insult.

I had caregivers who hurt my mom (she was ordered to leave before the end of the shift), one who Hospice complained to me that the caregiver was rough with and lacked compassion towards my dear mother, and two times the care giving agency and caregiver actually put my mother's life in jeopardy (oh, and in this case I tried to file a complaint with Adult Protective Services only to be told that since we paid for the caregiver they had no authority to investigate --- after going to 21 different county, state, federal, law enforcement and legislative offices the only answer I can get (since the explanation I got contradicts the law and is not the policy followed in other counties) was "we have an imperfect system with imperfect people" followed by a shrug and when I ask people to "do the right thing" I get a blank stare and silence -- like Newyorker said "obviously no one cares").

We had one care giving agency that overcharged us on almost every billing -- charging for hours not worked, for caregivers who were not even at our place, for overtime when overtime was not worked, etc.

At the very end I was able to find a caregiving company whose owner put her own name on the company and thus cared about the quality of service her caregivers provided. She sent me caregivers who she said "I would feel comfortable with them caring for my mother" and they lived up to this. This was the blessing I desperately needed at the end.

Maybe enough "awareness" can be raised (ie, enough pressure brought onto our elected "representatives") that maybe something good will actually be done and some good can finally come out of all of our caregiver (and loved ones) suffering.

I want to thank Newyorker and the others who posted before I did as it gave me the incentive to post. Bless you.

It is so sad to have to be living through this, and then to read all these wonderful sounding things that do not happen anywhere that I know of on this planet. Best wishes to you. You are doing all that is humanly possible.

In your perfect world that's what we want to have. But in the real world agencies, in the low income Passport Program, send aides that have no clue how to interact or care for an Alzheimer's patient. They'll take your money or charge your insurance for incompetent aide service and when you complain they don't listen to your concerns. They just send out a letter saying "we can't staff your are area". For over two years I've been trying to get competent aide service with no help.I've complained to the Area Office on Aging, the State office on Aging and even the Alzheimer's Association. I've called local and state representatives.I even called the director of Medicaid, John McCarthy, an I was told by his secretary that he has nothing to do with that type of problem. A Medicaid program and he has nothing to do with that type of problem. Who over sees these agencies? There is no one that will help. Because they don't listen to us little people. We just give a lot of lip service and excuses. Sorry for being so negative but that's my real world.

I have a six hour respite day every week and I just wish that we could find a caregiver who could stimulate mom during those hours. Since my world has become almost as small as mom's I ran out of ways to engage her long ago and mostly our days are silent as she no longer participates in conversation with me. I had hoped an outsider might get her to chat, or at least listen, about something new. Believe me I know how pointless it seems to try to include her, but I had hoped for more than a shower, lunch and back to bed.

Sorry but my experience has been very different. I can only report that there is absolutely no understanding from several agencies, up to 100 caregivers that I have observed. They do not even attempt to engage my husband at all in any activities, they ignore requests unless he words them to their satisfaction, and they make their own judgments , rather than follow his care plan. This has been reported to agency executives on the local and national levels, as well as to the Managed Long TermCare department of health at the State level. NOTHING CHANGES! I certainly hope that the situation is as good as this article reports somewhere. But in reality around here, most aides report to clients homes for four hours and will work one hour if we are lucky. They might "give a shower" and tell him to wash himself. If I don't manage to keep my eye on them every minute, they go straight to their cell phones or to comfy chair for a nap. Why does no one listen? Obviously no one cares.