7 Replies Latest reply on Nov 30, 2009 5:37 PM by Arnie

    Dementia

    Leelee
      How does one deal with watching your parent regress?  Mom is in a nursing home, but lately is very sad and thinks something terrible has happened.  It's hard to visit and yet I'm the only child in the area, and her friends seem to have gone into hiding.  I thought retirement would be a joyous time, instead I'm feeling guilty when I travel to visit my grandkids.  My kids and my husband also need me.
        • Re: Dementia
          Charro
          This is stressful, no doubt about it. It sets off all sorts of bells and whistles. When this happened to me, I tried to act in a way that would leave no regrets after my mother had passed. If your mom seems depressed, you might speak to her physician about it. Is there someway you can incorporate her in a weekly activity - just grocery shopping or lunch? You don't say what kind of shape she is in, whether she is ambulatory? Is there an activity you can do with her there that also engages her with others? Would she like a pet to visit? It's hard when it all falls to you. I used to send my daughter in once in awhile to give me a break. It's not JUST that it draws away from others in your family; it's also that it puts you face to face with your mom's aging.
            • Re: Dementia
              Ursa
              This was the most difficult time in my life.  It doesn't get better, but eventually the Alzheimer's patient doesn't remember enough to be sad.  It is heart wrenching for the person who has to visit.  I was able to hire a woman to take care of my mother six hours a day, and this supplemented the very sketchy care she got from the nursing home and she was much happier.  I have no siblings and I really did not want my children to see the degredation of someone they loved.  She didn't know who they were anyway.  My sympathies are with you.   You have to think about caring for yourself too.  This won't last forever and you will still have your family and your life. 
            • Re: Dementia
              LSPotter

              About everything in life, I like to respond "everything is perfect the way it is". My husband was diagnosed with Alzheimer's in 2003 but was showing signs as early as 1999. He is at home with me and very happy now. We went through the different stages after the diagnosis. He even spent 4-5 years in a retirement home in his own apartment and me at home about 7 miles away from him because of his depression. The doctor recommended community living so he could have more people and activities. Now he is at a stage where he really does not know where he is or who people are and the depression is much less than before. I am so grateful at all the things I am learning from living with him and helping him in anyway I can. By accepting your own mother with her condition and all that comes with Alzheimer's (depression being one of the effects of Alzheimer's) you will see that she has much to teach you. My husband's father passed away a year ago on Aug. 29 and his mother is still living (2,000 miles away). I told his mother, who was grieving for both her husband and her son, that I would take care of him as a mother holds her child. That was enough to satisfy her need that her son would not be suffering alone. I wish you the best and know that as a daughter you will be able to help her through this the best you can and at the same time enjoy your family too. BTW, I have a son and three grandsons whom I visit as much as I can. They have come to understand that I have to divide my time between all my responsibilities as a wife/caregiver and mother/grandmother. Stay well and God bless you.

              Ethelle

                • Re: Dementia
                  Leelee
                  Thanks for your words of wisdom.  I can't imagine what it would be like to care for a spouse.  Lukily my husband is healthy and supportive when I need to get away.  We've weathered a lot of storms in our 42 yrs together, including the loss of his parents.  My Mom used to get jealous of the time we'd spend with my in-laws, but at the time, they needed our help more and Mom was still driving.  After several falls that led to a broken hip, wrist, and most recently, tailbone, she's given up trying to walk and is now in a wheelchair.  When I look at pictures from just one yr ago, she looked so happy, and loved having her apt at a retirement complex.  I just don't know enough about this disease, and will probably join a local support group.
                    • Re: Dementia
                      LSPotter

                      Yes, that is one of the first things I did in order to get some information and guidance on the disease. The other thing I did was to purchase some of the books recommended to read. I found that the single best support came from the Alzheimer's Association. They call me on a regular basis and then I can call them at any time of day or night. There is always a friendly counselor at the other end. I encourage you to reach out in order to form a support system for yourself. I wish you the very best and let me know if I can help in any way.

                      Ethelle

                        • Re: Dementia
                          jkom51

                          I forgot to post this useful article earlier. There are many types of dementia (I've seen figures of 37-50 different types). Some are physically/nutritionally preventable; most are not. This article (excerpted) points out that palliative care for advanced dementia is often very poor. HTH someone:

                          Treating Dementia but Overlooking Its Physical Toll

                          NYTimes October 20, 2009

                           

                          Dementia is often viewed as a disease of the mind, an illness that erases treasured memories but leaves the body intact.

                           

                          But dementia is a physical illness, too — a progressive, terminal disease that shuts down the body as it attacks the brain. Although the early stages can last for years, the life expectancy of a patient with advanced dementia is similar to that of a patient with advanced cancer.

                           

                          The lack of understanding about the physical toll of dementia means that many patients near the end of life are subjected to aggressive treatments that would never be considered with another terminal illness. People with advanced dementia are often given dialysis and put on ventilators; they may even get preventive care that cannot possibly help them, like colonoscopies and drugs for osteoporosis or high cholesterol.

                           

                          A new study suggests that family members would be far less likely to subject their loved ones to such treatment if they had a better understanding of dementia as progressive, debilitating illness that ultimately shuts down the body after years of mental deterioration.

                           

                          “When family members understood the clinical course of dementia and the poor prognosis, the patients were far less likely to undergo these distressing interventions,” said the study’s lead author, Dr. Susan L. Mitchell, senior scientist at the Institute for Aging Research of Hebrew SeniorLife in Boston. “Dementia is a terminal illness and needs to be recognized as such so these patients receive better palliative care.”

                           

                          The study also found that pain control was often inadequate. One in four subjects were clearly suffering from pain, but that number may understate the problem, because the patients were unable to talk about their pain.

                           

                          Simply transferring a dementia patient from the nursing home to a hospital can lead to confusion, falls or a decline in eating — which in turn, often leads to further aggressive treatment.

                           

                          Geriatricians say a large part of the problem is that the patients are unable to make their wishes known. In the absence of a living will, family members often struggle with guilt and are afraid to stop aggressive treatment because they do not want to be seen as abandoning a loved one in mental decline.

                           

                          Dr. Sachs says doctors need to spend more time explaining the prognosis for advanced dementia, making it clear that palliative care does not mean less care.

                           

                          “We’re not talking about aggressive care versus no care,” he said. “Palliative care is aggressive and attentive and focused on symptom management and support of the patient and family. It’s not any less excellent care.”

                            • Re: Dementia
                              Arnie
                              My wife resides in a dementia-care facility.  She no longer recognizes me or anyone else.  Despite the fact that this facility is excellent and I truly believe the caregivers really care, I can see a real correlation between the attentiveness of the staff and the frequency of visits from relatives.  I stop by 4-5 times a week, talk to the doctors and staff, check on clothing, bring her some food I know she used to love, make appointments for hair care, etc.  Even though you may not directly benefit from the contact with the resident, frequent visits are important.  I see a few people in this forum say that they just don't visit their spouse or parent because it is too difficult or meaningless to the resident, but that is seldom the case.  Also, since this care costs about $85,000 a year here in SoCal, it also makes sense maximizing the quality of care.