The Trouble With Alzheimer's Care: One Family's Story

I can empathize with your family but most of all I am putting myself in the shoes of your father and wish that I would never go through the same experience. My mother who is now 86 years suffers from AD and despite all the hindrances and odds I experienced with my own family members, I never gave up on her. Aggressive behavior or not, AD patients are human beings that need more dignity than you and I especially in this state. My mother was aggressive and also suffered from severe attack of pneumonia but I did not allow her to give up so easily. I gave up my entire career and life to be at her side when she needed me most. We cannot blame doctors, institutions and nurses, but ourselves for first of all trying to get rid of the 'problem' and palming it on others. And when things don't go the way they should we start to point a finger at the caregiving team/s. We must remember, the other four fingers point back at us reminding us that in the very first place we should have taken the responsibility to try out caring for our loved ones at home. All they need your patience, tender loving care and the right type of nutrition. It is nearly two years now when my mother would have died in my arms, but no, I was determined to keep her alive in dignity and I did not fail to constantly whisper in her ears all the time that I was there for her all the time and would make sure that her dignity would stay in tact without having to be pumped with sedatives or being strapped to the bed. Similarly, I realized that when bedsores occur it is purely created out of negligence on our part. But again, if our suffering AD loved ones are cared for as much as we would care for our babies, I am sure the bedsores would be out of question, as we would have made sure that they would be hygienically fit, at home.

Why sedate our loved one so heavily and for such long periods? Is it to get rid of that responsibility to spare some time with them keeping them active in those ‘wandering’ or ‘sundowning hours’? Why not follow some caregiving course to understand this kind of behaviour and working with them than getting rid of them using the excuse that our loved one is ready to go to the hospice? If you cannot take care of them yourself, how would you expect the staff in the hospice?

Why not give observe the right nutrition and give them the right food supplements, which would pump good blood and oxygen to the brain thus slowing down the memory loss?

Constant care and attention from one family member, while the others supporting financially, would resolve many problems and the list of names to blame would not exist.

Guilt is what killed relationships in many families because of a loved one suffering from AD. It did so with mine. But most of them have come around.

My mother is still at home in India, and I am with her 24 hours with a helper to cook and clean. She does not have many years, but I do. I can continue with my career later on. Meanwhile, I need to give her that time she needs with her own family member to maintain her dignity till the time she deems fit to leave this world. She is very fit physically, and for the past two years no sedatives are given to her. So, instead of walking around like a zombie, she moves around our apartment independently and eats very well and sleeps well too. Her sense of awareness and her speech has improved tremendously, almost like a miracle. I try to keep her active all the time so the hours of moving around has reduced to an hour or so each day, in comparison to four or five hours before.

I want you all to understand that when we give up on our loved ones now, our time will come when our own children or those we depend on will give up on us in the future. So why wait to bear those consequences. What we sow now, we will reap later.

We have only one life to live, so lets live to the fullest and let others lives their lives the same way and in dignity till the end, as much as we would want to do so ourselves.

Genevieve Bronsema 2:52PM January 28, 2010

As I was reading your story tonight, I felt as though someone was writing the story of my own mother. My Mom has been diagnosed with AD for 10 years and the last 5 have been very tough. It got to the point that we had to place her in an Assisted Living Facility for my fathers health (he suffered a heart attack due to the stress of caring for her along with all of us) We also placed our Mother is a Sunrise facility in MA. She had been there about 8 months before they "section 12" her to a psych unit at a local hospital because a staff member claimed she punched her in the stomach/chest and took her breath away. (My mother is 78 pounds and at that time could barely stand or bring a cup to her mouth). We too found that she was "committed" and we could not take her out or home. We also discovered a huge conflict of interest, the nurse on staff at Sunrise was also on staff at the psych facility and she would be the same person who would approve or deny my mothers release back to Sunrise. When things were sorted, (by the way, our was Thanksgiving/Christmas holiday), we were able to bring her back to Sunrise with many stipulations, she had to move to a private room, we had to provide a private aid to care for her, give her meds, feed her and bring her to activities. As you can imagine, between the cost of Sunrise and the private care etc, it was to hard. She went down hill very fast, stopped doing anything for herself (which was very little as it was) and we had to make the difficult decision to transfer her to a Nursing home where she has been for the past year. She is with hospice now and although I don't like the nursing home because of more astetic reasons, she is still cared for by skilled and mostly caring people. It takes a special person to work with AD patients and you need to know when your time has come to move on as I can see from a response from Ginger Manss who commented above.

Kathy Leneweaver of MA 12:33AM January 26, 2010

If our mother has it as did her father, when do we start the medications? I had my Mother pre-checked and put on Aricept as soon as the neurologist felt she crossed a line--he added Namenda too and tried to substitute the third type (a patch) on two separate occassions-but both times the increase in memory brought too much self-recognition of her problem and she became too anxious for her own good and unable to sleep a nights and began wandering. Articles emphasize over and over to get on meds soon...but the outcome is the same...a slow goodbye and lots ot time and effort.

My mother , as well as my father-in law-, were in the Rennes nursing home in Appleton WI after surgeries. Renne is high quality, high expense and is VERY good at billing for everything as noted by the employee/caretaker comments made above. They regularily changed out phy therapists, especially when introducing a new way to increase billing. I sat through a day and a half of therapy to get Mom off of restraits, oxegen and medications that kept her from recovering but were huge income sources for Rennes. I had to "see through" gauges that did not accurately test oxegen (make the therapist wear it after the same exercise). When I failed to sign for increases in "mood" drugs, I was told that I was asking the impossible....when my mother indeed did not yet have advanced dementia...and she came back fine. She had to be certified competent once she was able be off of mood meds and tools by a $425 psychologist. She moved to assisted living in a community built non-profit nursing home/assisted living/adult care, doctor office complex in her small home town. It is called Good Shepard Nursing Home and Meadowood Assisted living. It was built by 16 neighboring churches 25 years ago.. WONDERFUL model. They have not missed a point in their first 25 year of unannounced visits from the state authorities. Employee turnover in Mom's assisted living wing (1 of 2) is zero in the 18 mons she's been there. Her dementia is growing; her questions repetitive, all instruction have to be converted to short notes after 4-5 repetitive discussions over 5 days. Our long goodbye is a journey...but I have to say thankfully that she is not aggressive. I tape the names of her long time friends , as well as her daily table partners, on a note she keeps inside of her refrigerator(which only has a quart of milk). Getting her off the patch left her less organized but not so fearful-she does not know fear what she does not know. In the end, you really have to be on top of a lot and ready to question alot. And ready to laugh whenever possible. (Two months ago she asked where something was. I mentioned it was in the other room. She ask which room. (Assisted living units only have two rooms)....so I replied with a sweet grin... well, um, um, um the only other room you have. And we were both able to break into a laugh. It won't last much longer...but I will keep on trying.

Susan Shimon of WI 7:40PM December 10, 2009

I thought this was an excellent article. It tells the truth about what one can expect having a parent who is diagnosed with Alzheimer's disease. This is a horrible disease.

My mother, 78, was told that she had Alzheimers, which refused to accept. She later suffered a stroke, was hospitalized. She was kept in one of those geri chairs and then she was restrained to the bed. Long story short, she suffered several additional strokes, sent to rehab. She was sent to a GeriPsych Unit, evaluated, medications changed. We were told that she needed to be placed, we didn't want to do that so we brought her home. Her behaviors became so uncontrollable, we feared that she would hurt our father, who himself is frail and not the big, strong man she married many years ago. My mother now lives in a nursing home. My dad, 80 goes every other day to visit her. She isn't happy about this move into the nursing home, but it was the best option. She can be cared for, her medical needs can be addressed.

This has worn my family down. I, as the only female child, have had to step up to the plate and do for my parents. My own life has stopped and is non-existent. Some people have said, "Be glad that you never married or had children, because things would be so much worse." I don't know how much worse they could be. I am losing my mother with each day. I wish I had been able to care for her, just like she cared for me.

Stephanie of PA 9:43AM September 28, 2009