Is it possible the nursing home made my mother's Alzheimer's worse?

7 answers | Last updated: Sep 29, 2016
A fellow caregiver asked...

My mom passed away about 3 months ago she had Alzheimer's and she lived with me until she had to go to a nursing home she was only in a nursing home for a couple of weeks till she passed away. I feel so bad that she had to go there, is it possible being there made her Alzheimer's worse?


Expert Answers

Audrey Wuerl, RN, BSN, PHN, is education coordinator for Hospice of San Joaquin in California. She is also a geriatric trainer for the End-of-Life Nursing Education Consortium (ELNEC), which promotes education in geriatric nursing and end-of-life care.

You are to be commended for caring for your mom for as long as you did. But, I would not feel bad for placing her in a nursing and think they may have made her "Alzheimer's worse."

Alzheimer's disease is a progressive dementia that is ultimately terminal. As you probably know, there are many stages to the disease. Behavioral problems"”combativeness, inability to care for their own needs, and wandering (to name a few) are reasons family eventually place their loved ones in nursing homes. Hospice care would have been helpful in supporting your mom (and you) in the nursing home setting by explaining the changes that were occurring, the "whys" for these changes, and by providing a peaceful closure.

Often we hear "horror stories" about care received in nursing homes. I expect most of it is exaggerated. My experience has been that although most of us want to be in our own home, this is not always possible. And the nursing homes I am familiar with really do try to give the best care they can. Further, nursing homes have what we call ombudsmen who are individuals from county agencies who serve as advocates for the patient. In other words, they speak for the patient even if they can't speak for themselves. They make sure patients receive proper care in these settings.

Try to concentrate on all the good things you were able to provide for your mom"”staying in your home, receiving care and love from you, maintaining her dignity"”and not dwell of the "what ifs." Try to celebrate her life, and know, you did the very best you could.


Community Answers

Mychael answered...

I have worked in both situations and change in a person with Alzhiemers life will cause confussion... Leaving home is a hard thing for anyone do, it is change. Even though the nursing home stories I could tell you are not exaggerated. I believe that change is one of the harmful factors that happens in the life of people with alzhiemers. Like it or not change is always going to happen, however it isn't always a good thing. The suffering is over and in that sence change was the best thing.


Rrc answered...

I can tell you from experience that the bad care in nursing homes is not exaggerated. Over the years we have had several relatives we were forced to put into a nursing home because we could not quit work to care for them. My wife died of Alzheimer's May/24/2010. She had not been able to talk for several years as a result of her sickness. When she could talk she cried and told me she was afraid of going into and dying in a nursing home. I promised her I would never put her in one and could keep my promise as we were both retired. My health is not that great but I would have died keeping my promise and then my son and his wife would move in and care for my Shirley. With the help of Hospice I was able to keep my wife Shirley at home and even have 4 more stents put in my heart 2 months before she passed away. My wife was one of the unlucky ones. She knew what was going on right to the end. She was a sweet person right to the end and fought death until I sat with her and kept telling her it was okay for her to leave us as we would take care of each other. The hospice nures who was there when Shirley was dying told me that Shirley needed the extra encouragement from me and that it helped her to move on. It was the hardest thing I have ever done. Can you imagine being trapped in your body and not being able to communicate. 3 months pior to her death she had an accident while being watched by a home health care aide and I think she broke something in her back as she became paralyzed. Before the accident Shirley could blink her eyes or shake her head yes or no to communicate with us. The E/R would do nothing to help find what was wrong with her. They forced me to put her in a nursing home for 4 days at my own expense so medicare would not have to pay for follow up on her E/R visit. this was until I made arangements to get a hoyer lift and equipment needed or else take her home in the worst snow storm of the winter. I turned them in to the obudsman and only satisfaction I received is that the hospital would think twice before pulling this on someone else as my case was on record. I still had to pay. This is when Hospice came in to help me. While Shirley was in the nursing home I had to stay with her as there was not enough help to properly care for the amount of patients in there. Unfortunately the name of the game is profits. rrc


Carpandkoi answered...

My mother has dementia as a result of strokes and TIAs. Any time my parents travel, she becomes confused. It has not been as befuddling when they go to their summer home.

She is visiting with me this week. She has been referring to my husband and me as my aunt and uncle, who she visited last week. She has intermittent clarity about my home. She has asked what made us decide to purchase this place. We have lived here for 29 years.

Change in location is confusing. Stability is key in maintaining clarity. But don't discount the need for your loved one to be in a place where help in care is available. You cannot always do everything yourself.


Heleni answered...

Nursing Homes horror stories are not an exageration. People working in the industry try and support their jobs by playing down the issues. Its too late for advocates and state guardians to help the patient when they are dead!! In the truth be told Office of Public Advocate in Australia (VIC) is a useless body pretending they look after the vulnerable. In fact they contribute to the problem and the abuse by "neglect" and not "acting in the best interest" !! Lets face it how often really do these people give to the old and vulnerable do you ever see them helping anybody doing the hands on work? (NO) they are useless pen pushers. These strangers don't know nor they really understand your loved one neither do they listen or understand or put the quality time to hear the person. Our mother was put in a nursing home by force by the OPA (Office of Public Advocate) Guardian where she had numerous falls, fractures to the head and brain clots, she was admitted to emergency due to blood clots caused by falls she had in the nursing home. The OPA Guardian wouldn't allow doctors discuss mums condition with family by this strange appointed as mums guardian through VCAT. In emergency i spoke to doctors who freely spoke to me before this Guardian stepped in. Nursing Homes are traumatic for dementia patients because new places are frightening and traumatic for people suffering from dementia. Truely nursing homes are not the proper place for individuals with this type of ailment!!!!!


Rrc answered...

Heleni: Anyone that has delt with a nursing home or hospital knows what you say is 100% true. The Obudsman program in the US doesn't have much power to help. Their hands are tied by regulations. The elderly sick are taken advantage of by many nursing homes. With the new changes being planned for medicare recipients our health care will be rationed more than it is now. The biggest cuts in nursing homes are the personel that work overnight. If you have a loved one in a home you must be there all the time for them to be properly cared for. If at all possible keeping your loved one at home for as long as you can will make their last days on earth more bearable.


Carolann71050 answered...

Sometimes a nursing home is the only choice. After reading these answers here and often having remarks made to me about my mother, I am left with total depression to the point that I cant get out of bed. I cant give my mother or care for my mother as well as her nursing home staff does. I too said I would NEVER put my mother in a nursing home. I did the assisted living. then ..small family owned foster care where she almost died in 2 different homes. The homes, may I add looked perfecty at first. They were out for money alone and no staff . I worked in nursing homes as a young gal and said Id never do this. I found a place close to my house , it is clean and needs more staff for sure. but has more staff then the assisted living home and more then the foster homes....that put the people to bed at 7 pm ...drugged them and treated them life infants . At least at the nursing home, she has many people and doesnt feel alone. she doesnt have to go to bed ...she wont get out of the wheel chair and never goes in a bed. she sleeps only in a chair. she is back eating again...goes up and down. and does cry that she wants to go home. she doesnt have a home ...we lost it along the way of her illness. I am in my sixties with a 43 year old mentally challenged son who also has mental illness. My siblings dont visit but once in a while. I do her laundry and buy her clothes. soon she will be on medicaide and that will be a struggle too. Im tired and feel a deep sadness that she is not with me....but I cant do any more. and the worse thing is people who act superior because they were able to keep the parent at home etc.......