Alzheimer's disease

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• August 16, 2012 9:59 a.m.

  My dad is in the last stages of Alzheimer's and is basically starving to death - he hasn't anything to eat and very little to drink for 1 week today and is barely with us. We do not know whether to put in a feeding tube at this point - some care personel state at this point the body would reject it but how do you stand by and watch someone starving. Just wondering if anyone else has faced this in the end of life of this terrible disease.

  - Sharon

• February 3, 2012 1:33 a.m.

  My Mother is 82 and has had AD for about 10 years. My father passed away in 1995. I have 4 siblings and 3 of us live close to Mom. She currently lives in a memory care center, which she seems to like. She is happy when we visit her and appears well cared for. When it was apparent that Mom needed help before she moved, first to an assisted living, we talked about caring for her in one of our homes. We all have families and active lives and mom wanted her independence. After much discussion and praying we decided to try a local memory care unit and have been happy with our choice. Caregivers, remember when caregiving, you need to first take care of yourself so you are able to care for your loved one. (Like giving yourself the oxygen first on the airplane) Putting Mom into the Memory care unit was hard on her and us. We visit her almost daily, I am two minutes away, and her local grandchildren stop in occasionally also. Mom appears content, and happy. We pray this continues for her. At this time she knows our faces and sometimes our names, still is able to eat most food, walks unaided and will even try to dance if she hears a waltz or polka. I also pray for her caregivers that they have patience and love for my mother and all her friends at their home. DD

  - DD

• January 26, 2012 1:19 p.m.

  My husband has been on this journey for approximately nine years. We have been together for 22 years. He goes to a day program and I care for him after work and all other times. A few months ago , I had to attend a business meeting out of town. I took my husband to a residential facility. I was devastated and cried constantly. I felt that I was not living up to my "end of the bargain" as a wife. Is there anyway or at anytime, that this guilt goes away ? My husband is entering a stage where he no longer can do anything for/by himself. It is taking a tole on me and my work. At what point is it "ok" to say, I just cannot do this anymore ??

  - Deborah

• November 7, 2011 3:16 p.m.

  My wife lives at home, has moderate Alzheimers. She goes to day care at a residential memory facility three days per week for about six hours at a time. I provide all other care and take care of all household needs. She is getting progressively worse, often forgets who I am or where we live. Most other memory is muddled and there is no short term memory. Unless she is at the day care facility she has little interest in doing things or being engaged in any activity. Our daughter lives out of state but traveling to see her is a huge challenge due to my wife's confusion, etc. I feel I am dealing with the situation, but at a price which is having my own life. I think she is getting close to being better off in a residential facility and I better off as well. I need some help in understanding when that becomes the right decision for both my wife and me.

  - Keith

• October 4, 2011 11:20 a.m.

  My Mother has had Alzheimer's for eight years. She still knows immediate family but has very limited short term memory. She lives with my Father in a memory care assisted living apartment. Dad is quite sick and we expect him to die very soon. I would appreciate any thoughts or experiences about how to best deal with the situation. Do we tell Mother and if so how? Do we take her to his funeral?

  - Dave

• September 21, 2011 3:06 p.m.

  Thanks MC for giving us a "place" where we can share our experiences. My sisters and I took the decision to put our father in a home care facility, and at the beginning he was reluctant to stay, or thought it was in "his home" and wanted all the caregivers to leave "his home". He went through several medications to control his anxiety and agressiveness as other people suffered aggressions from my dad (a 75yr old in VERY good health). He's quite calmed now, but if we take him on a family day out (ex: Father's Day), when it comes to leave him at his new "home" he recognizes that isn't his real home. It makes me real sad, but I've managed to put his safety FIRST when it comes to "feeling guilty"!!! God bless you all who are making decisions for your loved ones!!

  - Marenid

• August 18, 2011 7:45 p.m.

  Thank you for your wise councel. We just moved my Dad into a care facility. He is very agitated and wanders at night in the home. He tells them that the Health care people made a mistake and he needs to go home. Obviously I feels very bad about this and even have gone to sit with him though the night. He doesn't even recognize me and keeps moving in his wheelchair. Last night it did help a little to massage his shoulders and talk softly to him (although he is very deaf so it may not have worked). He seemed to calm but still didn't want to go to bed. I agree with your statements but still feel so bad to see my brilliant, loving father in this place.

  - Terry

• June 16, 2011 1:53 p.m.

  I wish that more information would be available to caregivers whose patient had significant pre-morbid psychiatric pathology. Most of the literature assumes that the patients are sweet little old ladies and men who will cooperate with caregivers. This is not my reality at all as my patient is very belligerent and refuses all medical care as she ties this to a threat to her independence. She is a danger to herself and others as she refuses to quit driving. The revocation of her drivers license cannot occur until she sees a physician. Many people believe that the solution is to take away the car or the keys to the car. The problem with this is that she has the means to buy any car she wants, which she could purchase as she still has a drivers license. She is an extremely difficult woman, and her primary care physician just discharged from his care when my husband attempted to get his cooperation in revoking her drivers license. She will only eat sweets. Our hands are tied until something breaks with her health status necessitating a trip to the doctor. I try to take her wherever she needs to go, but I cannot be at her beck and call 24/7, although I need to be. She will not accept any help from outside sources except for a housekeeper. We are living in continuous fear of her injuring herself or someone else. My point is that caregiving is much more challenging with patients with significant pre-morbid pathology, which is rarely addressed by caregiver forums.

  - Anita

• May 28, 2011 9:45 a.m.

  My dad is 93 years old. He was diagnosed with Alzheimer's 5 years ago; although he had noticeable symptoms long before diagnoses. My brother took early retirement 3 years ago to take him into his home and care for him. He used to take short walks with us; using a walker and with assistance from us. It seems like we have battle one fear and then another in our journey. About a year ago he developed a fear of going out the front door; so we were unable to take him for walks outdoors. Then a few months later he developed a fear of stepping out of the bathroom into the hallway. He has little to no verbalization so has never been able to verbalize his fears; we have been able to pick up clues by how he reacts and grabs hold of door ways and resisting forward motion. The past two months we have seen a dramatic decline. He was able to walk with the assistance of 2 people; now it is all we can do to get him transferred from bed to a wheelchair and then from the wheel chair to the toilet seat or shower chair. He eats and drinks only with assistance. The past week we started hiring help and receiving assistance from hospice. A hospice nurse visits weekly and bath attendants come from hospice 3 times a week. We are afraid that placing him in a home will cause another fear reaction which might lead to a state of total unresponsiveness and then coma and death. Any other suggestions? or help in a way which we are not looking? Prayers are gladly accepted.

  - cindy

• May 7, 2011 6:14 p.m.

  My dad was diagnosed with Alzheimer's in Dec. 2009. He was getting a little forgetful and then on Dec 30, 2009 he woke up and didn't know my mother, where he lived, etc. He has never come back. Two weeks go while my mom was getting laundry together in the back of the house my dad swiped the keys, got in the car and left. Of course he was involved in an accident that was his fault. He sustained a broken collar bone and lots of bruising. Thankfully the other driver was not injured. Both vehicles were totalled. This set him back tremendously. He has now gotten to the point where he wants to leave even more, doesn't believe anyone and is becoming increasingly angry. Today he grabbed me by the arm and shoved me thru the door twisting my wrist and spraining it. I am worried he may be doing this to mom...but she won't admit it. He is still very mobile and is a big, strong man. I talked to mom and told her it may be time to look for placement. We both are heartbroken...but I don't see any other options. It's really hard especially since I am a nurse and know how most homes operate, I work in the hospital and see the condition some of the residents are in when we get them. We are just at the end of our rope, is there any other way? I love my dad and hate to see him (and mom) suffering like this.It's tearing us all apart.

  - Terri

• April 29, 2011 11:17 p.m.

  I had been caring for my mom since Jan.2011 she has Alzheimers.She once sewed or did some tpye of crafts,she enjoyed her church,friends,and many activities.Driving too to NC to visit family,alone or with relatives.She now sleeps,and eats very little,there is no more conversations with her,or if she does she repeats things over and over.This is weighing on me heavily.I don't have a life any more.I feel so sad to see her this way,she use to be the life of a party.When I look in her eyes,she is gone.I have to bath her,hold her when she walks,because she is unsteady.She just last night said to me " I looked in the closest and saw alot of Quilts I made,I didn't know I had all that stuff back there." I need to sell some of it." She also said "I think my mind just stopped."She doesn't even watch TV it watches her,she use to read book's,no more.After reading the post from others I felt like leaving mine.Guess I rambled alot but it has helped to know someone else cares and is going thur the same process,somewhere.We all need each other.No man is an island.

  - Angie

• April 15, 2011 5:18 p.m.

  Are there any occupational resources websites I can refer to for my 82 year old Mother with moderate Alzheimer's. She used to enjoy cards with my Father, latch hooking and embroidery. Her eye sight at night is poor. She would like to do some of these things again but they would need to be in a more simple form. Suggestions?

  - Cindy

• April 3, 2011 1:30 p.m.

  My wife was diagnosed with early onset AD four years ago. I've taken care of her until last week when she became violent. She is now in a memory care facility until I can figure out how to pay for her permanant home. I'm finding all the memory care facilities are very expensive and most do not accept Medicare nor Medical. Only private money. It's hard to believe that there is no help for this horrible situation.

  - Tom

• March 27, 2011 11:03 a.m.

  Sherry, you posted your question one month ago and frankly, I don't have any answer. I am struggling with the same heart wrenching issue. We brought Mom (age 75) to MN last summer and she still wants to go back to her home in FL. We did sell her Jeep but it did not go well, which I understand. Who wants to lose their independence? I have not sold her home yet because I wanted to give her time to adjust to being in MN and see how life can be when she's closer to us. By the grace of God she still has the mental capacity to be in an independent living facility. I have made the decision to bring her back to her home in FL for one week in April so she can have closure with her friends before we list the townhouse. I know this comes with the huge risk that we will push her backwards emotionally. It just felt so wrong to my brother and me to not give her the chance to say goodbye. I am very conflicted because I'm constantly thinking, "How would this feel if I was Mom?" And the reality is, it would be very painful for me as well. I also know that, with time, I would adjust. The blessing for us is that we are spending more time with Mom than we ever have. (Although she doesn't seem to appreciate that as much as us.) :) I will send up prayers for you and your family. Jill

  - Jill

• March 14, 2011 12:53 p.m.

  I too thank you for the five ideas. We are in the "mild cognitive impairment" starting of all this. But each day a little more of my husband ticks away. His processing skills are fading along with all the other. I just had to tell his sister to back off. She does not want to know about his any of this so it makes it difficult for any kind of support. So the five ideas helped me tackle that.

  - Sandra

• March 10, 2011 3:41 a.m.

  It's 4 a.m. and he can't sleep; so I can't either! This is the second night in a row of this waking at 2 am and then keeping us both awake. I have tried everything. He had the flu and I spent 24/7 getting him through that. Now when I let down and try to get rested up-- no sleep. Feels hopeless at this time of night. My family is marvellous at supporting me, but they have their responsibilities too. It is hard to accept that we will never have our old life back There is only one way out and it is not a happy choice: losing him. but then I've already lost him in so many ways. A while ago I was so upset. He comforted me, let me cry and patted my back for a long time. So we still do support each other and he can still help me. Thanks for listening. I feel better.

  - grandma Jane

• March 9, 2011 5:23 p.m.

  I too am the only caregiver for my 62 year ols Husband with AD. He was diagonised 5 years ago and is in the final stages. I recently received a book titled The 36-Hour Day from my . doctor. It is very informative and a very good read. I have found that the more I understand the complications of AD the better I cope. Thnaks to all of you for your post. May God Bless You All.

  - Carole

• March 8, 2011 12:28 p.m.

  My wife had a dementia that was not AD, probably FTD, and it tortured her to be so aware she was failing. For 34 years she was my best friend. It is hard to look forward without the partner who always helped sort things out and make plans. As the eldest of nine, Barbara had a keen executive mind and love of order and foresight. She also loved to be active outdoors. The irony is that the thing that took her down was a type of dementia that took away all that mental ability and then began to disable her body. I lost most of her gradually before she left me. This helps me by giving me an opportunity to discuss my loss, and help me grieve. They tell me I have to accept the pain before I can move on. That’s beginning to feel right, and this note is a step along the way. Thank you for “hearing me out”. I hope it is not too much of a downer, and wish everyone knew, as I remember remember Barbara as the sharp beautiful woman she was until near the end. I could not bear to have her away from home as she declined and decided I would bring in 24 hour nurse aides even if it cost all I had, and there is no doubt it was the right thing to do. Hospice helped greatly, too. I was able to hold her close on bad nights until she slept, and be near and holding her hand at the end.

  - Ray

• March 6, 2011 1:00 p.m.

  My mom had a stroke and this led to dementia. We cared for her at home for awhile until it came to a point where we knew she needed total care. Mom would say, "I have no identity" or "I don't exist". I lived away. So I started sending her cards with her name on them and gifts. When I visited, I would bring an acorn or a pinecone so she could feel them. She was a gardner. Just little things she could connect too. She is gone now and I miss the connection we had. She loved a coffee or a pudding. My sister who is mentally challenged and has cebral palsy has been in the same home for over 30 years. She has been the longest resident in this home. Mom and daughter would have words. Being a mother didn't stop even in care. Ours was a difficult childhood and I didn't know how she would be treated by her children. But we treated her with dignity and we did love her even with her faults. Make your time count and look for the special moments.

  - Barbara

• March 2, 2011 7:23 p.m.

  Hi Leanne: I was reading your letter re: helping your mom as she does not like ensure and just getting her to eat more. For my downsyndrome daughter, I put the ensure or boost into a blender and add two scoops of ice cream, whirl it about and you have a good shake with more calories and protein. How about baby food Junior fruits, they are not too bad. Try to find time to puree your own foods and perhaps her taste buds are gone, so add a tsp. of instant (fruit) sugar, that disolves instantly . Also, gingerale, with ice cream done in the blender for an ice cream soda. Put the cold drinks in a thermos cup to keep them cold longer. Mash a banana with sugar, put a dab of whipped topping on her jello or puddings. Ensure and boost have puddings. I keep instant potatoes on hand for something quick if she does not want what I offer. Put your margarine/butter on them. Instant rice as well, but I do not serve that alot, as I am a make your own person. That's all I can think of for now, all the best to you, bon a petite for your mom. God bless you.

  - margaret

• March 2, 2011 7:04 p.m.

  I guess we pretty well all go through the same mental anguish when looking after a family member that has a/z or some form of dementia. My anguish is a wee bit different, but right up there with the rest of you with hurts, remorses, etc. My downsyndrome daughter is 45 yrs old and I am a 73 yr. old widow of 18yrs. My daughter not only has her mental disability but Hep C as well, and that destroys brain cells, and most downs get alz/, so she has 3 strikes against her. She is going downhill quite quickly and has lost 18 lbs since Christmas. She is now on minced foods. She is at home with me and she can sure be stubborn, expecially lately when it come time for a shower. She goes to a nursing home for respite every 2-3 months and that is for about 10 days. It helps alot, and the staff are reasonably good, but there is no place like home. She knows more than she can express. Always has been that way. She got hep C in 1984 via blood transfusion re: heart operation and showed no symptoms until 4 yrs ago and 3 yrs ago we found the reason for her enlarged liver and fatigue. I have been told, that I wll finally get some help within the home with her. She has been in bed 24/7 since Christmas. She has had a very good life and has done more than alot of children. Special olympic swimmer for 10 yrs, bowling, camping 4-5 x's a year for 10 yrs., white water rafting, airplane rides, etc. We must concentrate now on the good times , do what we can and leave the rest to God.

  - margaret

• March 1, 2011 11:15 p.m.

  I have my 88 yr. old sister with me and the second stage of dementia as her doctor described to me. It is really hard to watch what she is going through. I have really got allot out of reading about other people that are going thru tese sad stages of the loved ones lives. As much as this has helped me I do wih I had someone to talk to. Just to be able to put my feelings into plain words. I haven't been able to find a help group but will say this I am thankful I have found this blog...it has helped me in many ways. Thank you all and do as I do, feel and think....I do the best I can and am not regretting it one bit!! milly

  - milly

• February 28, 2011 5:53 p.m.

  My Dad died 1 year ago on the East coast and I brought my Mom home to the West coast to live with us. I'm the only family she has besides 2 granddaughters. She was diagnosed with early Alzheimer's shortly after arriving here. The doctor says she can't live alone 3,000 miles away. I am facing selling her home which she still wants to live in. How do I tell her the house is being sold? This has been the most difficult task. Thank you so much for your newsletter.

  - Sherry

• February 28, 2011 5:41 p.m.

  My Brother is 76yrs. Has Alzhemer's we are not sour for how long it has been going on ,but we think for 4 or 5 years. He has stop eateing. And will drink very little.He keep saying he is not hungery. He has never been Married and has no children. So it is up to me and my youngerbrother .Is ok. Help. Please post soom if anyone has a answer. Thanks

  - Claire

• February 28, 2011 11:11 a.m.

  I think eventually I will need to find a place for Ken to live but, for now, even with all the challenges, I'm remembering to enjoy every special moment we share. We have been married 53 years. It is now at the point that I change his depends, put his jammies on and tuck him in bed. He know longer remembers exactly which side of the bed is his. When all this gets accomplished, I almost feel as though I had an opportunity to view him when he was a little boy. In many ways he is as he will sit next to me at bedtime while I read to him. It's not an easy time for me but I am reminded how quickly our little girls grew into adult women and I know this is a fleeting moment in time.

  - Jan