Alzheimer's disease

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• April 7, 2013 2:26 p.m.

  Last night I cried myself to sleep. Yes, I was overtired. My grandkids(4and 6) had been here for 4 days with their parents but I had a sitter for my husband one day and the other days, he came with us. I was exhausted! But the last straw was after they were gone I found that he had gone to the bathroon and got feces all over himself and his clothes and a chunk was in the sink. I just lost it. If I don't go to the bathroom with him and clean him myself, that's what happens. He forgets he needs to use paper. I tell him to let me know when he has to go but I'm not with him every minute. I might be in the kitchen or the bathroom myself (a different one). It's hard to keep track of him every minute. I manage to get a sitter less than once a week. I'm really almost to the end of my rope. He's had dementia since 1999 and I am his sole caregiver. I'm just worn out. What can I do to solve this particular problem? Has anyone had to deal with this sort of thing before?

  - Judy

• February 16, 2012 5:33 a.m.

  The biggest problem I have is, I am the youngest child, I have an older sister and another sister and a brother. Both my sisters live in NC and my brother lives here within a couple of miles of me. I would love to be able to take a mini-vaca and go somewhere, however my brother and his wife "SMOKE LIKE CHIMINIES" Literally. When I had a wedding or a funeral to go to I've left her over there for the least amount of time possible because I care about all the smoke she will breath while there. My brother is also unsure about caring for her, as long as she doesn't need HELP in the bathroom he's OK with her sitting on his couch for 4-5 hours. After this amount of time he wants me to come and get her. I have her in day care 4 days a week I get 4 hours aday to myself. Sometimes thats just not enough. I've been doing this for going on 3 years this April 15....I Feel guilty wanting a mini-vaca however "I NEED ONE" My sisters would never take her for a week or so and even if they did I would have to transport her back and forth to NC. It a 10 hour deive that ends up taking 12 or 14 hours because I have to Stop frequently for potty and to get her up to walk around otherwize she turns into a stone-person and cannot bend her joints get's really stiff.I guess what Im trying to say is I wish I had someone I knew and trusted well enough to watch her so I could get away. My husband ids the only one working so we live off his check and mom's SS money plus my Brother

  - Laura

• January 23, 2012 6:53 a.m.

  My 88 yr old Mom has had ALZ for probably 7 years. Since her last hospitalization from a bladder infection, she has not been the same at all. She is home...but her sleeping at night is barely existent. My father now sleeps on his couch because she insists on talking the entire night. I have a baby monitor on so I can hear her calling out for me and run to her aid. I probably go downstairs to her room about 25-30 times a night. I am exhausted.....I love that our relationship is so close and endearing but through the night I tend to become short and firm with her in a desperate plea to get sleep. Today she goes on a waiting list as a crisis patient for a nursing home. I can't go on and my Dad has claimed he's headed to a mental hospital if we don't stop trying to tend to her ourselves. There's 7 of us in the household and while my children and hubby support me, the night times are very lonely and her yelling keeps everyone awake. I have a sister and a brother.....I believe they sleep great knowing that their Mom is being looked after well by their sister and father. However.....I'm so disappointed in the lack of understanding and lack of help. If other family members outside the home took the time to help, maybe I would have some more life in me to continue keeping her home. Dad questions them in his talks with me....it hurts him.

  - Marian

• January 11, 2012 11:34 p.m.

  I am a 67 year old woman taking care of my 78 year old husband who is in the mid stages of Alzheimers. More and more of my life is taken up with catering to his needs. I am so angry. I am also fearful. I no longer love him. I feel nothing but contempt. A few weeks ago I thought I'd found a solution. If I stayed calm during his tirades and not let his actions provoke me, then he became calmer also. But that didn't last long. He was never an easy person to get along with, and now his worst traits have come to the foreground. He's suspicious, stingy, greedy, and ignorant. We're told not to take things too personally. It's the disease talking. But when you're subjected to it 24/7, it gets to the point where you just die a little each day. God forgive me, but I'm wishing he would die so we'd all have some peace.

  - Joy

• December 14, 2011 2:13 p.m.

  Home care is truly what should be accepted for an Alzheimer's patient but we do not live in a perfect world. Caregivers must work and earn money because government subsidies are not really consistently available Loved ones are shunted to nursing homes, away from families and friends. Visitors are far and few between and the loved one becomes worse, either by him/herself or via administered drugs. What could result from this conundrum is shown in the latest novel by Shawn Graves and Don Canaan--abandonment. Check our website, http://www.DutifulDaughter.com and read the first chapter below: CHAPTER 1 “Well, aren’t you a pretty little thing?” Laura froze. The sounds of the fair were drowned out by the roar in her ears. It was already warm and promised to be a hot day, but she was suddenly chilled…and a little girl again. “Daddeee…..I’m scared!” One of her earliest memories was sitting in one of the cars on the Ferris wheel as it rocked lazily back and forth. The wheel had stopped with their car at the very top and all of Fresno and the surrounding areas spread out from the fair grounds, the lights of thousands of homes and businesses twinkling in the night. She clung to her father, squealing with equal amounts of horror and glee each time she peeked out over the edge of the car to look down on all of the people. It only took a few seconds before she buried her face against her father’s shirt, the fabric fisted in both small hands. His arm around her made her fe

  - Don

• October 23, 2011 3:10 a.m.

  It's a battle. I deal with feeling good in achieving something with Paul, my husband, and feeling anger about other things I cannot change. Today I read to him and he was really into the story. That made me very happy. Then I got home and thought he was going to bed. Right now he is the tub for a second bathtub and I can't make him to see it as wasteful and unnecessary. Thank you for the article.

  - Marinalva

• October 6, 2011 10:20 p.m.

  I do not prtend to be an "Alzheimer's" expert. I have been a hospice volunteer for about 25 years and currently am seeing my first Alzheimer patient. By God's grace I am blessed with a lot of time and have the privilege of spending about 12 hours a week with my patient. He has early onset Alzheimers. He is in fairly good physical shape but must have 24 hour care.His wife works full time and hires a part time caregiver in the morning. Are there other resources that could give assistance to caregivers who are "stressed to the max"? It has been a blessing to me to be associated with this beautiful family and wish that more volunteers could spend time with these folks.

  - Mary

• September 22, 2011 9:04 p.m.

  Hi ! Bonnie, my husband likes to drink and cannot remember how many he has had. I buy Beck`s at Costco and he drinks that sometimes. He know`s I don`t like him to drink but he, likes to escape to the bar when I am not around. I have tried everything. He could go at lunch and at 5 pm tell me he didn`t go - as he doesn`t remember. It is very frustrating.

  - Nancy

• September 22, 2011 4:19 p.m.

  I used to get angry at myself and my mother who is in stage 2 of dementia. She used to not understand her situation and denied she needed any help. I could handle that almost better than now. She is more at peace with the situation, now that we have her medications identified and more evenly provided. She still does not understand why she has to be in a care facility, but she no longer is angry. She now stands on the other side of the door when I leave and asks why are you leaving me? I find it very difficult to look back at her and have to walk away. That empty feeling stays with me for many hours. The more I see her the more she expects to see me, and the harder the separation gets. I know I can not take care of her, but it is still hard to believe I am doing the right thing. I just hope that she forgets it faster than I do. It is a terrible disease and I know it will get worse.

  - Wayne

• September 19, 2011 7:33 a.m.

  Simon, since we still don't know the cause of Alzheimer's, there is no proven way to prevent it. All recent studies seem to indicate that whereas life style, nutrition, and other 'common sense' courses of prevention might be helpful, as of yet there is NO nutrition or life style change that has been conclusively shown to have ANY effect on preventing AD or slowing down its progression. Save your money on vitamins and supplements ... they do not work. Even the FDA approved meds for 'treating' AD do not prevent AD nor can they cure AD. For some, even these meds do not help at all, and for those who are helped by them, the positive effects of the meds usually last only for a year or two at most. If/when researchers can determine the actual cause of AD, then ... maybe ... more effective meds will come on the market

  - Allan

• September 19, 2011 7:05 a.m.

  Hi, I've read a few of your blog entries and think they provide a great insight for Alzheimer's caregivers. I'd to hear more about the disease itself and possible preventative/maintenance measures for sufferers of Alzheimer's. Can diet/nutrition and lifestyle increase the likelihood of getting Alzheimer's in later life? Or is it strictly hereditary? I've bought various natural supplements such as Ginkgo Biloba for Alzheimer's prevention from sites like Syncro Health but what is Ginkgo Biloba and can it really be that effective in preventing such illnesses? Could you do an entry on these sort of topics? (i.e. nutrition, lifestyle choices that might impact Alzheimer's?) Apologies if you have already written something on this subject - I couldn't find anything.

  - Simon

• September 16, 2011 6:45 p.m.

  It's not easy to be angry... and there isn't always the support you talk about in your article. So what do you do - how do you find the right care, someone you can trust to care about your loved one like you do?

  - kathy

• September 15, 2011 1:08 p.m.

  Family support is critical when caring for a parent etc. Please don't leave it up to just one member of your family to look after your mother or father, etc. It's not fair to your sibling. At least call them if distance and work prevents you from visiting often. We don't know exactly with all the research what a patient will or will not remember. Show up and be there to support or pitch in a few hours to give breaks where they are needed. After all is said and done, my friend's mother is now in 24 hour memory care. Her daughter is getting the rest she needs after 5 months of exhausting care for her Mom and for her step-father. Respite services are available at many Assisted Living centers and skilled nursing facilities. Blessings to all who have to care for a loved one. God is with you each step of the way.

  - T.

• September 15, 2011 10:30 a.m.

  I took care of my husband for 5 years before he died last Feb. His mind was ok, but he was physically dependent. My heart goes out to you folk who describe taking care of your loved one who has AZ. I identify with the feelings of helplessness, anger, and grief. Even though I did everything I could to help my husband get well, we were always adjusting to a new normal as his health continued to fail. I became exhausted and depressed. And angry. Not one person in his family nor mine offered to help. Church? Forget it, they weren't there either. (My belief now is in God but not "the church"). Months later, when I would run into someone from the church, and they would sympathetically inquire, "How are you?" I answered, with an edge to my voice, "I'm fine, how are you?" Why should I share any bit of my self with them when they could not even call to ask how I was doing during the time I suffered so much for my husband? Yes, I work this with a therapist, as well as my grief at what he went through for so long. Just typing this, I cry. Concerning some of the above situations where your loved one does not make good decisions: it's hard, but there comes a time when we have to assume the decision-making role. My husband used to smoke. When he could no longer get the cigarettes, I did not get them for him. Later, he was proudly telling people, "I gave up smoking, just like that!"

  - Ruth

• September 15, 2011 12:51 a.m.

  I am a wife of 47 yrs & caregiver for a man who is paraplegic and is showing dementia symptoms. I find that I had dealt with problems in the past well, but lately am showing signs of stress that are very worrying. His brother and family live nearby, but there is no offer to assist or spell me and I wonder how others deal with this. I think they are afraid to be drawn in so keep their distance although say call if we need something. I have taken care of both my husband's parents one of whom was an Alzheimer's patient who was finally in a care facility, so my worry is that my husband might follow in his mother's footsteps and I can't see a care facility taking care of my husband and his special needs as a paraplegic. I just go on every day hoping that I can "fix" things as I have done for all the years of our marriage. This man was always very independent and was able to do most things for himself, but at 77 needs more assistance. There are times I hate it when he calls verbally or by phone as I'm doing other things or just hiding for some time alone and react so angrily that it scares me. I'll read all the comments from others with similar issues and shall get the publication for myself and a friend caring for her Alzheimer's husband. Thanks for dealing with this terrible issue.

  - Leslie

• September 14, 2011 8:24 p.m.

  Decided to check my email because I'm just so exhausted and needed to sit down by myself for a few minutes and there was the newsletter and blog. It really does help to know that I am not alone dealing with this. Reading your posts has helped immensely. I'm dealing with two - mom and husband - well he's an ex now because of this disease. I was busy looking after Mom and didn't realize it was happening to him as well because he is early onset. He became extremely paranoid and agitated and violent, and he ran off. Now in addition to Mom, I'm dealing with an ill man divorcing me, who has no idea what is going on. It's destroying our kids, he's getting worse day by day, and I'm exhausted.

  - Diane

• September 14, 2011 4:14 p.m.

  Helpful comments! How about the blame game? A step daughter, Linda, was quoted as saying I "had driven Daddy to psychosis"? Cruel, mean, ignorant from her own fear of inheriting the disease/the probability of the disease. But still--how do you deal withthat?

  - Joan

• September 13, 2011 1:53 p.m.

  Dear Bonnie, It is so difficult for our loved ones to give up the independence they have known and enjoyed all their lives. It was difficult for my mom to give up driving and no longer carrying a purse (she would leave it all over the place.) Keeping large amounts of cash may be an independence issue. This may be a bit sneaky but as far as the drinking, once the bottles are purchased, can you water down the alcohol? Would she notice the difference? Cash? My mother was hoarding money and then couldn't remember where she hid it. We would find it in the most ridiculous places. She lost over $1,000 and it was never found. If she doesn't keep the purse with her at all times, perhaps removing most of the money and putting it in her bank would be better. Just keep some there so it's not so obvious some is missing. I dislike that this sounds devious but sometimes you have to be creative to protect your loved one. Most importantly, is there a support group in your community? If so, I highly encourage you attend some of their meetings. For many, you can take your Mom with you. This will be a huge help for you and they may be able to offer some suggestions when you have a new dilemma in your life. Believe it or not, later on she will allow you to take care of her and there will no longer be any fight left in her. She will simply enjoy the love and attention you are giving her. Blessings, Nellie (actually Nel)

  - Nellie

• September 12, 2011 5:20 p.m.

  Thanks Nellie. It's good to know that the hunger issue isn't one. I'll just keep feeding her and hope she eats. So I should try to control her alcohol consumption? She is the one who wants to stop at the liquor store. I need to find a way around this without offending her. Ugh!!! I do pay the bills out of the bank account but she carries large amounts of cash making her a target for theft. A sales clerk at Walgreens warned her that it was dangerous. I thought that would be enough but no. Caring for the elderly is hard, convincing them to let us is harder. Thank you for your input.

  - Bonnie

• September 12, 2011 11:23 a.m.

  Dear Bonnie, What you are feeling is quite normal, it seems as we all have experienced some of this ourselves. First of all concerning hunger, brain receptors are no longer working as they should. They usually have to be reminded to eat or reminded that they already ate. My mother went through both of these. Now she doesn't remember that she has eaten. A good way to work through this is offer small meals throughout the day rather than 3 big ones.As far as the money situation, you might want to approach her knowing how busy she has been. You would be more than happy to pay the bills for her. One step at a time. Carrying on a conversation is difficult but she needs the stimulation. You might simply discuss things that may not be that difficult. As far as drinking, I am assuming you are discussing alcohol since you weren't specific. If the bottles were removed from the house, would it help? Family...if they have computers, post a weekly email with updates on your Mom being completely frank about the situation. Who knows? That may cause at least one to call or write. Last suggestion....try to find a support group nearby. You could really use someone to talk to. Hope some of this helps.

  - Nellie

• September 12, 2011 9:44 a.m.

  My mother has Alzheimers and is in a nursing home. At this point she has lost much of her gross motor skills and sometimes has difficulty feeding herself. Her memory will last a few minutes at best. My father passed away almost a year ago this September. He and my mom were VERY close. The day after the funeral, we told my mother the news and of course she was broken hearted. By the evening she had already forgotten. My family visits her daily and on occasion she mentions how she misses my father and questions why he hasn't come to visit her. On the other hand, on other days, she'll metion that I just missed him or that Dad had made such a good dinner for her. On the days that she is sad because she hasn't seen day, my brother wants to remind her that Dad has passed away. I disagree as I worry that she will be broken hearted all over again. Any feedback on this would be greatly appreciated.

  - nellie

• September 11, 2011 10:13 p.m.

  WOW! Look at all of us. We so desperately need someone to talk to we talk to strangers.And I, for one, am grateful for you all. I have only my daughter to talk to. My sister and uncles seem to have stopped calling. They were only calling to talk to Mom anyhow. None of them will talk to me. Since they are no where around when I need them I am glad I have you all. I have a couple questions you may be able to answer. 1. Mom likes to drink. She can drink a LOT. She is an adult (sort of), and I am not a control freak, so. . . do I just let her drink? I don't want to deprive her of what she wants (although it does seem to depress her). 2. Talking to her is difficult. She can't hear me, understand the idea I attempt to convey and she can't remember what we talked about. So, as a result, we don't talk much beyond the necessities. I feel guilty. 3. She spends money on too many clothes and general junk (for lack of a better word). Money is tight. She controls the purse strings when the check comes in, but she don't pay bills or transfer it to her wallet (bank envelope). It don't looks safe. How do I change this situation with tact? 3. She don't recognize hunger any more. How can she not identify that she gets hungry and needs to eat? Any help or input is appreciated. Thanks to all my new friends!

  - Bonnie

• September 11, 2011 8:02 p.m.

  Another question to ask: How can I put this anger to productive use?

  - Doug

• September 11, 2011 12:35 p.m.

  This is my first time writing. I am angry but not as much with my husband as my self. We have been married over 50 years before this disease appeared so we could identify it. I had thought my husband was suffering with something but he would get so angry when I ask him to see a doctor, I would back off. He had always been a very healthy strong man and I was the one that had battled cancer, plus other illness. He always said never worry, I will take care of you. Let me do what I know is right now and later you can do what you want. I was such a fool and went along with his ideas. Now I have to take care of him and he still will not admit he is ill. He still want to control. I am angry because I believed him when he told me all the things we would do. I let him have his way, doing all the things he wanted to do, thinking my time would come. But now, I am here taking care of him, yet he think he is in control and taking care o f me. I can not have over 20 minutes of private time, with out him coming around to see what I am doing. He still thinks he can drive and don't trust me to drive. I do the driving and he has to ride with me because I will not ride with him but he sit there in the car, looking so very angry. To go out with out him, is not often, he can stay alone but when I get back, he is so angry as if I had stayed too long. I just wish, I had not listen to him and did some of the things I wanted to do when I could have, then now this would not be so hard.

  - Mary

• September 10, 2011 6:38 p.m.

  Anger, I have got lot of anger, you know what? that is what keeps me going, I symphise with anyone who is a care giver, anger is a natural thing, I get angry with my wife when she hums all the time, no madder if I'm grocery shopping or trying to buy her some needed garment she is humming, the Questions, hundred times the same question, but you know something, I really miss all of that, she took a 4 day trip to a granddaughter's wedding with her kids and I can'r hardly wait until she gets back, I miss all those questions and the humming, siblings should help more and give you more time to miss your love one, I've found that you have to have time to be alone and miss your love one. travis...

  - Travis