Alzheimer's disease

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• October 6, 2010 9:54 a.m.

  Very frustrating getting medical help for our Mom. She has long-standing mild, chronic depression for which she never got much help, and now has rapidly progressing dementia. Remains undiagnosed. Finally on an anti-depressant with so-so results. Her doctor says he wants to refer her to a geriatric psychiatrist cuz he doesn't really know much about anti-depressants in the elderly, but then he says "that doctor isn't taking new patients, that doctor won't accept her insurance, etc., etc.). Same with neurologist. So 6 months go by, she is getting worse, he is no help, the town is small, and NO doctor in that town will take new Medicare patients. She lives in this no-man's land between counties that offer geriatric services. She's occasionally hospitalized overnight for some thing or other (anxiety, or a fall), they discharge her back home with no resources. And every single medical provider who has ever seen her stares at us like we have 3 heads when we ask about geriatric care services. I feel like I'm living in a third world country.

  - Karen

• April 8, 2010 5:36 p.m.

  If only I could turn the calendar back 25 yrs to have a Dr. tell my brother & I that our Mother's odd behavior & comments was early Alzheimer's. She became an expert at hiding so much and we thought she was strong willed or hard headed or she just grew up in another time. She is now 94 and only 2 yrs ago rec'd a dx of Alzheimers' stage 5. My 59 yr.old brother died and I tried living with her to no avail as she became quite violent because I "was taking over her house." She is now in an ALF , on meds and doing much better. My sadness comes from knowing we would have been SO much more understanding with her had we known years ago and she should have been medicated long ago. Often, family must Baker Act the pt. in order to get the medical world to listen while you are screaming, "Help us". It is hard to do this but in the long run it will benefit the pt. They are like a child who no longer has any idea what is best for them nor do they want to be what they have become.

  - Linda

• March 28, 2010 6:59 a.m.

  I have just read a couple of the articles and the relevent comments. To read my own feelings and concerns expressed by others has been very moving. I don't usually post comments on websites but I just wanted to thank everyone for being so open about their own experiences. My mum has AD and it is very hard for my dad. He has agina, arthritis, stomach problems and is now depressed due to the pressure of caring for mum along with watching his wife 'disappear'. He also has the added problem of being a very independent and stubborn man which limits the amount my sister and I can do help. It helps hear others comments who are going through the same thing. Thankyou

  - Sandra

• February 25, 2010 4:35 p.m.

  My Mom is sliding into stage 6 I think. She is in a nursing home of her choice and is happy there. My downsyndrome brother (57) is in a group home and is sliding into stage 3 of alzheimers. Mom does not understand about Bobby. She gets very angry and calls the group home demanding Bobby be brought over to visit with her. I'm told after such visits Bobby cries alot and has follow episodes of crying. This is making it difficult for the staff to help him. My question is: should we stop the visits to Mom? (Bobby visits on Wednesday and Mom cannot remember the visit and thinks she is being denied his company). She

  - MARLEE

• February 23, 2010 1:45 p.m.

  My mother is a dementia patient. I believe she is in Stage 6. She is always angry and has started to bite. She also having some spacial problems - Holds toothbrush 6 inches from dentures. Is this an expected change? can her anger and biting be treated? Thanks.

  - Joanne

• February 21, 2010 8:28 p.m.

  Pam, you provide yet more reasons to seek a diagnosis early when you say 'helpful information flows to us because our friends are on alert & helpful and, 2, we know how important early diagnosis is, and we know others are going to face this as well'. Know one knows your loved one better than you, if your doctor will not listen or take action, seek out another doctor.

  - Angela Lunde

• February 21, 2010 8:21 p.m.

  To Carol and anyone else looking for a support group in their area, contact the Alzheimer's Association Helpline at 800 272 3900

  - Angela Lunde

• February 17, 2010 11:52 a.m.

  My Dad has Alzheimer's. It has been devasting for the entire family. My Mother is has primary caregiver. She is 82 but thankfully young for her age. The toll is wearing on her. She is depressed and does not take advise well. I have a bother, sister, brother-in-law and nephew. We all do what we can to help but it is hard. My parents are not rich. They do OK with their SS and pensions but that only covers so much. We use a non-profit called "Share the Care". They are a great source of assistance. My Dad does not like to go there, but we take him anyway. We have found that his limit is about 4 hours before he gets angry and threatens the care people. We need more funding and assistance for Alzheimer's patients. This is a very serious problem and more people are being diagnosed with AD everyday. The baby boomers will have a hard time if things are not addressed now. My Dad is a Veteran and they don't have the proper care or assistance that is needed.

  - Donna

• February 14, 2010 9:21 a.m.

  My husband is the second generation to have debilitating short term memory loss. He and his father both got'lost' in their familiar neighborhoods and could not keep track of simple conversations. Both presented as 'repetetive' and anxious about what they could not remember. They are thought to have lead or other exposure or 'mini strokes'. Uncontrolled high blood pressure has long been linked to Short term memory loss but it seems that the spurts of high blood pressure may factor in also. If we couldprevent these without lowering the blood pressure too much maybe some of the STM diseases could be prevented. There is so much that we don't know...

  - kay

• February 13, 2010 7:55 a.m.

  There is another aspect of early-onset dementia that I haven't seen mentioned. That is, even younger spouses who have to work while trying to take care of and coordinate care for their spouses with Alzheimer's. It's exhausting, but I can't quit my full-time, stressful job right now. We still have financial obligations made when both of us were working.

  - Bonnie

• February 12, 2010 4:10 p.m.

  Alzheimer's early diagnosis and therapeutic support groups for loved ones are an interest of mine as a professional psychotherapist and a mayo-clinic trained RN. There are many persons such as myself who would be willing to start these groups but experienced professionals are not being utilized efficiently. I also believe these online services are helpful to loved ones who can access a computer but many cannot and need to be reached and services provided. I know so many families with alzheimer's who have never been offered the option of a support group. Early diagnosis needs to be offered and available to families who may suspect a problem emerging or also for a client who may worry or have concerns about memory changes and are afraid to see a Dr. or think it's safe to wait. confidential and easy to access resources would seem to be an asset in early intervention.

  - Yvonne

• February 12, 2010 8:43 a.m.

  Irma's words deserve re-printing, and they describe how I feel: "My husband does not understand what the future holds , and I barely understand what we must face together and for how long. I am grateful for the years we have shared and hope that I can be patient in guiding him through to the end. Sometimes we laugh at the absurd happenings, but .. I peer into the darkness..." Meantime, we have chosen to be transparent w/ our friends in this early early stage we are in, and this is for two reasons; helpful information flows to us because our friends are on alert & helpful and, 2, we know how important early diagnosis is, and we know others are going to face this as well. If we can be open, it may make this process of getting diagnosed a bit less scary for others. We are hoping for a long plateau with the aid of Aricept, which is all my husband is on at this point. I do wish for an "early stage group" to talk with: issues seem different at this moment from those down the road. Learning functions and roles (financial) I never had to attend to, to share the learning process with him as my teacher as best he can help--that's a big challenge and also where, I think, I have 'dumped' the bulk of my anxiety (even though much of that worry is amorphous really and is not just about finances). If other AnnArbor folks want an EARLY STAGE (not early onset)group, let's leave our name/contact w/ the UM social worker w/ the current Turner Center caregiver supp

  - pam

• February 11, 2010 4:00 p.m.

  My husband and I have been blessed with a bountiful life ... with friends and family and the wherewithal ... physical, financial and spiritual to enjoy life. Now in our Golden years my husband has Alzheimer's. No one has given me that as a diagnosis and he is taking Namenda and the Exelon Patch to prolong his cognitive abilities, but... He is not the same strong-willed, witty man who was always ready to meet whatever was in our destiny. Fortunately, we have pictures from 1956 through today to help him to re-create part of his life with me. At first I was angry at the thought of his loss, but the loss is more mine than his in some ways. To reminisce is to re-live and savor moments we enjoyed, which we can no longer do, but looking at the life we have shared makes him aware that we led a full life. The lack of control over our lives disturbs me, because I have set mileposts to be reached since I was very young, but now we try to enjoy each day , which will not be remembered. My husband is very healthy , eats well , partcipates in family life, but, he cannot drive, he cannot ride his bicycle on long drives where his will used to take him. My husband does not understand what the future holds , and I barely understand what we must face together and for how long. I am grateful for the 53 years we have shared and hope that I can be patient in guiding him through to the end. Sometimes we laugh at the absurd happenings, but .. I peer into the darkness...

  - Irma

• February 5, 2010 8:51 a.m.

  My husband was diagnosed with Parkinsons and Lewy Body Dementia and so was treated for that. He was in a Parkinson drug study and got really bad so I took him off some of his medicine and he got better. At any rate he passed away this past April and the autopsy showed he had Alzheimers and Lewy Body but no Parkinsons. He was 81 and I am wondering if he would have had a better last few years and lived longer if he had been diagnosed right. They need to work on getting a test to give a true diagnoses. My husband had all the signs of Parkinsons and yet thats not what he had.

  - Beverly

• February 4, 2010 11:45 p.m.

  AMEN !!! My husband was diagnosed at age 75, in early stage AD. He began the first drug then, actually improved his "score" by two points in that year, added a second drug 2 months later when he began to decline, and has maintained that improved score for over a year now. IT IS IMPORTANT TO GET AN EARLY DIAGNOSIS AND TO BEGIN TREATMENT EARLY !!!! So far he suffers mostly memory loss; confusion happens only with strange situations and/or moderate to high stress. We can live this way quite well, thanks to his getting early diagnosis and treatment.

  - Judi

• January 30, 2010 3:38 p.m.

  Thank you, Angela, for your kind words and for this comprehensive response. I expected that my remarks would generate considerable response because, as I had written, I have heard from too many people who have expereinced very similar situations with misdiagnoses from doctors or lack of support from their local branch of The Alzheimer's Association. I think your response is right on point. However, I must disagree, with all due respect, with the remarks of your colleague at the Alzheimer's Association. If the Alz. Assoc. acknowledge that there is a strong need to provide support groups for those in early stages and those who are under the age of 65, then it would appear to me that the Association should be diverting at least a small portion of its present assets ... personnel, facilities, etc. ... to such early interventions. As a retired elementary school principal, I know all too well about difficult decisions when resources are strained. In such circumstances, it is even that much more important to try to meet all existing needs at least a little as opposed to ignoring some existing needs completely. An analogy would be for me to have spent all of my limited school budget funding only on the middle and upper grades and ignored spending any money on the primary grades. Sorrry, but that logic makes no sense to me!! As others have noted along with me, here and on other AD web blogs, people in early stages and at young ages need support now. Not years from now; now!

  - Allan

• January 30, 2010 1:12 p.m.

  Can you tell me if there is a support group in the Minneapolis, MN, area for adult children of early onset? My 57-year-old sister has early onset, and I would like to locate a support group for her children who are my neice (23) and nephew (18). Any help?

  - Carol