Alzheimer's disease

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• December 31, 2012 6:59 p.m.

  Does anyone have knowledge of resources for dealing with guilt over placing a loved one in a dementia unit?

  - patricia

• December 31, 2012 6:31 p.m.

  We just placed our father in a dementia unit a few days ago and we are having a terrible time dealing with the guilt. We know that he feels abandoned and wants to go home; yet he is even wonders if his own home is really his. We have done at home care for nine years, but we couldn't get sleep. Somehow we just can't accept this even tho it is a very caring dementia unit. Will this pass? He is packing all his clothes to go home every day. It has been 6 days and all we do is cry

  - patricia

• October 16, 2012 12:27 a.m.

  I'm writing a blog to de-stress myself and would like to share....sheilamariegrimes.com

  - sheila grimes

• June 7, 2012 7:23 p.m.

  Jack is my 86 year old father-in-law, I recently married for the second time Sept, 2011, to his step son Terri, who has been caring for Jack the past 12 years by himself. When I met Jack, I knew that one day if I married Terri I would become that second wife to Jack as a caregiver in their home. It's been almost 2 years and Jack is slowing way down, and dementia is setting in more and more each day. I read stories of incouragment on here and it helps me alot. At least once or twice a week I stuggle caring for him. I took a leave of absence from work to be his permenant caregiver because we did not have the heart to change his normal daily process by putting him in a nursing home. His behaviors sometimes bother me alot, like stairing at me all the time every move I make and even while I'm eating,following me around as I do daily chores. He gets into this habit process like eating 8 yogurts a day or pudding and a gallon of koolaide or soda. We had to lock one of the frig's to control his fluid intake,he goes from one habit to another after we control another. Now he sneaks yogurt and soda from our personal frig. when the door to our room is open,so we put lock on our door. We bought him a personal frig. for his room and he was told that what is in there is what he allowed to have each day as it is stoked in the mornings but he won't touch the other things only the yogurt and pudding. He eats because he is bored,and watches tv all day,he won't socialize outside the house. Help

  - Robin

• April 29, 2012 10:21 a.m.

  Hello to all of you amazing people! I have just come across this blog by accident when I was researching another medical issue and I have never been so pleasantly surprised. I am the main caretaker for my 85 year old mother who has Dementia. Oh what a challenging journey we are on, as I obviously do not have to explain to all of you. But in reading the stories here about how the emotions can run from one extreme to the next and feeling as though I am now dealing with a 7 year old that wants what she wants right now and if she doesn't get it a tantrum will break out. I too have started to validate what ever emotion she is seeming to complain about at the time, which is usually anger. So I will say, "I see you are very angry" and she gets so excited and replies with "yes I am" as if I am the only one in the world that understands her. Then I will try to divert her attention to another subject just like one other blogger had mentioned and it really seems to help. I don't know if anyone else out ther has this problem but my Mom is so paranoid. She believes that everyone in her AL facility is out to get her right now and she can't seem to get off of that fixation. Any thoughts? Well thank you all for listening and being here. It sure felt good to get all of that off of my chest. Sometimes I cry really hard and sometimes she makes me laugh, but I just hope she doesn't tell me that she wishes I would be dead anymore because I love her more than anythin

  - Diane

• April 12, 2012 2:49 p.m.

  These stories are beautiful. I just want to say that I wish everyone posing here the best as they work through Alzheimer's Disease's effectes with a patient and the time afterwards. I have just started reading up on this disease both here and on other blogs http://www.squidoo.com/alzheimers-disease-support I hope everyone has found the support that they need.

  - Samantha

• April 4, 2012 9:43 p.m.

  My husband's journey through all this horrific illness ended Feb. 7th. He is finally at peace and the nightmare has ended for him. It is so sad how his family still could not see but a slight change in him, right up to the day of death his daughter asked if they were going to come get him and take him to the dinning room for dinner. Not even a call from his family, they even over ran the funural, I couldn't even bury my husband like I wanted. I will miss him every hour of the day if not minute of the day. He was like a 5 year old child at the last, and I even miss that child along with the wonderful man that he once was. I am greatful for God, that he heard my prayer and the angels wrapped their wings around him and took him to a wonderful place, I long for the day that I will see him again.

  - Donna

• March 22, 2012 1:32 p.m.

  My husband and I are caregivers for his 100 year old mother who has dementia. We are not sure what stage she is in, but will find out soon at the next Dr.'s appt. Caregiving is challenging. but when your loved one has dementia, it requires even more patience. The repetitiveness, hiding things and the forgetfulness are daily occurrences. There are days when she feels that we are the best thing in her life and very thankful for us, the next day she wants to tear up the house, she hates it because we are against her. God bless the families that are doing the best they can to care for their loved ones, it is not easy. Find strength in knowing that when you do the best you can, God will do the rest. : ) Thank you for listening.

  - LindaL

• March 17, 2012 8:00 a.m.

  This is for Leslie who posted in early January. This is the first time I have ever bogged and it is about something near to me now. I was married to a vet for 23 yrs. He was a great husband and father but things started changing. I wrote letters to his doctors and went with him to appts. but due to his young age, in his 50'es at the time, no one would listen to me. We are now divorced with a 21 y/o and 14 y/o and he has been diagnosed with vascular dementia. He was diagnosed at 59 y/o and is now 60. This man is so stong. He has reversed being a diabetic, survived 5 heart bypasses (although 4 of the 5 are now clogged again), survived a heart attack walking in a thunderstorm to the store last May and has now been diagnosed with a 5.5CM aneurysm of the aorta. The VA sent him home to our 21 y/o after being in restraints for 11 days. We had a time even getting him in the house. He had lost all muscle use. She spent a miserable night with him punching her in the eye and falling from the sofa 4 times. There is not an agency willig to help since he does not have insurance. He did get transferred back to the VA hospital. We are at a loss. He has no other family to help. It is so sad and exhausting. I have not worked a 40 hr. week since last May b/c I am always running him to appts. or get a call that he is lost or left the stove on unattended. Then he has a very lucid day and we get a false sense of hope that he really is getting better. Letting U know I understand!

  - Shelly

• March 12, 2012 6:40 p.m.

  I am part of sandwich generation, my parents 83 and 84 now live behind us and we provide care while raising our 15 year old. Our daughter is a godsend, her busy activities are all of our sanity. My father has dementia and from all accounts is in the 6th of 7 stages. Right now he can't speak well, needs assistance toileting, wears depends, and is now having problems feeding himself with a spoon or fork. My mother is primary caregiver with us hiring someone one afternoon a week for her to get out, us assisting on weekends, meals on wheels deliveries and us bathing and shaving him. Without question this isn't easy, fortunately for us his personality is sweet. My mother misses her partner and gets very stressed. We try to make opportunities for her to get breaks. Emotionally I am having a hard time. I try to be strong and just appreciate that he's with us and painfree. However I miss our talks and the essence of my father. I know and see glimpses of him, i find him adorable and have a glimpse of what my grandparents saw as they raised him. A trusting man that reminds me of a sweet young child. Simply i have to care and protect him. But how I yearn to talk with my dad again, and have him care and advise me. I miss the strong father that made me feel so safe. Hopefully I make him feel safe. He trusts me completely. I love you dad very very much.

  - Bookmom

• March 7, 2012 10:48 a.m.

  I stumbled on this site, because of my link with cancer survivors, but now I am also taking care of my 80yr old mother. This has been a struggle since I still work full time, but I am very close to my home, from work. I also have a problem with her taking a shower or bath. She thinks that, "just washing down with a wash cloth" is good enough, but it isn't. Also, the constant arguing of her thinking she can be back at her own home. She doesn't understand that that is not ever going to happen again. Has anyone had any success with telling their parent that you cannot be by yourself...?

  - Diane

• March 4, 2012 5:58 p.m.

  HI I read Linda's question about getting her mother to the doctor etc;. I have a similar problem with my husband who has Dementia. He loves to go out to eat so I tell him after his appointment we will go out to eat. He still complains about going to the doctor but as long as he is going to get a reward this usually works. Diane

  - Diane

• February 14, 2012 11:49 a.m.

  Linda - by the way, I don't want to mislead you - we bathed once per week - it simply wasn't on a regular day because it required multiple approaches so while trying multiple times each day and working toward a routine if it didn't happen on Mon. or Tues. - we'd finally have success on Wednesday.

  - Theresa

• February 14, 2012 11:43 a.m.

  Linda, I understand the life change of leaving career to care for your mom. I too did this for my mother-in-law. When caring full-time bathing was our biggest challenge. I haven't met a person suffering dementia yet that likes water! Requires creative negotiations. My mom-in-law was a bather. I'd fill the tub & warm the room. Using hit/miss creative and multiple approaches each day. I would negotiate including snacks and/or an activity afterward (important to follow-through!) It was always difficult & required multiple attempts, creative tries in approach and even therapeutic fibbing. I chose morning or evening (before dressing or before bedtime). I got everything ready would bring her into the bathroom and my therapeutic fibbing was usually that she asked to bathe and it's ready to go. She always gave push back I would show her the magazines she asked for - why we didn't want to waste water - in the evening she would have wine (grape juice in a plastic wine glass!) and that I would stay to chitchat. Begrudgingly she'd get in. She would be mad as heck through the process - once she said, "I used to love you - I don't love you any more - when I get out of here, I am going to do something miserable to you - I don't know what that is, but it will be miserable you can bet on it." Following each challenging experience - once dry and warm again - it was as though it never happened and most often if AM she would need a nap because it was stressful for her

  - Theresa

• January 26, 2012 2:50 p.m.

  I have two elderly parents, one with stroke (recovered) issues and the second, with Alzheimer's. My Mom diagnosed in June 2009. Needless to say, it is quite a challenge. I blessed because the disease has not progressed to the more severed stage. I believe she loves being in her OWN home, familiar surroundings, her dog & two cats. The doc states she is not getting worse, just more short-term memory loss is being realized. Each day is different. Lately, I am frustrated and angry at times. Mom loves to "hide" things, I now just keep what I want to locate (i.e. coffee/coffe stuff upstairs. It avoids my hunting in the a.m. when I am in hurry to get ready for work. I wonder if anyone out there in blog-land has any suggestions for utilizing Mom's memory?? Games, I've tried puzzles, crosswords, she isnot much interested. Athough, she loves to read. Let me know.

  - JANICE

• January 16, 2012 5:11 p.m.

  I've been caring for my mom for 11 months. I had to leave my job and move from my home to NY in order to do so. It's been lonely and challenging, yet simultaneously magical and rewarding. However, I have one major issue that I have no clue how to deal with. She refuses to go to doctor appointments, the beauty parlor, take a shower, etc. Anything that requires leaving the living room is out of the question. Recently my brother and I asked if she'd take a shower at least once a week, and she responded, "Once a week? Are you crazy? I have to take one at least three times a week!" She has no real awareness she doesn't do these things, or a sense of time. Each morning she says today is the day for the beauty parlor or shower or...whatever...and I say, "OK, let's do it!" Like clockwork, she replies, "Dont rush me. I cannot do it now. Maybe later." But later never comes...I just get the same answer. I had to put her in the hospital in order to get some things checked out since I can't get her to the doctor. Has anyone else had this issue? Does anyone have any suggestions? (She is also legally blind from macular degeneration.)

  - Linda

• January 14, 2012 3:36 p.m.

  I am caring for my wife of 51 years, at home. She was diagnosed with AD five years ago. My biggest problem now is her bladder and bowel incontinence. We have been using insert pads, which help but do not overcome the problem. I would welcome any comments re medication or techniques found to assist in this situation. Mal

  - Mal

• January 9, 2012 9:59 a.m.

  I have been caring for my mom for just 6 months that is compounded by care for my dad related to a hip replacement over the summer. I admire all of those that have been in this situation for years. The main problem I am having is with a sister that lives just 5 miles away. She is a psychotherapist that has compassion for clients but not her family. She has no respect for my efforts and will not talk to me about plans that she has for them. She makes plans for my mom without asking if I think it appropriate or not. Many times the plans are in the evening which is particularly difficult for mom. She becomes completely disoriented and doesn't remember that she has lived in this home for 50 years. I would like to keep mom in at night especially, but that desire is being undermined by my sister. How do you deal with siblings that not only refuse to assist in any manner, but then undermine your efforts?

  - Pam

• January 8, 2012 8:21 a.m.

  I too am a longtime member of the sandwich generation club as primary caregiver for my 86 yr old mom over approximate ten year slow but steady dementia journey. This summer she went from comfortably living at small ALF to hospital after small stroke, then to nursing home one month for rehab. Ugh!-could not settle for 'good enough' care for my mom who deserves 'nothing but the best'. As a nurse, I could not lower my standards. So... on the search again. Found small 3 resident home nearby who could care for her through end of life- perfect. We moved her again Sept 1st. Thankfully she adjusted well, excellent personal care, close enough to visit often and be involved in her care. After about 6 wks there, I was blind-sided with the news home was closing due to financial reasons so for lack of a better alternative, here we are back in her own home (kept for legal reasons) with 24/7 care. Thankfully, because of who she is, she has adjusted well once again. I, on the other hand, am a wreck most days. But because I am committed to see her through this un- asked for journey with dignity, respect, and love there is no turning back. I have 4 sisters who take part but not any more than they have to it seems. This has always been frustrating but in order to keep the peace I just zip it. Did you know there is a silent rule that us caregivers who are also mothers, wives, siblings, friends, employees must always smile, keep calm, stay strong, not show emotion, be present, and carry on ???

  - Lori

• January 7, 2012 6:52 p.m.

  For all of you out there experiencing the challenge of communicating with very emotional loved ones with dementia here is system that helped me. On a sheet of paper make a list of all the emotionally charged/negative/frustrating comments your loved one regularly says. Underneath each of these comments write the most positive comment you can think of. For example, to the comment "You never come see me" it could be "I know Mom, I can't wait for the day when I have more time to spend with you." If they something out in left field that is not true you can say "Boy, I can see that this is really making you upset." Then try to redirect the conversation with a compliment such as "That is a beautiful sweater...it looks so good on you, Mom." These are just simple ideas from teaching young children: acknowledge how the person feels, redirecting, complimenting to change their focus, etc. I started doing this with my own parents and saw results right away. Other families in the Memory Care unit picked up on it and were pleasantly surprised at the difference in their interactions. The reason you write all this down is to practice your responses so that no matter what your loved one says you know what to say and are not caught off guard by your emotions.

  - Kathie

• January 7, 2012 5:21 p.m.

  I am so glad there is others who care for aging parents with dementia.Sometimes I feel so alone and nobody understands.I have cared for mom during the last year as she become worse.During this passed year mom had three homes,her own home/respite at the nursing home which she hated and most of the time with me.Mom I love so dearly,needs 24/7 care.My question is Mom now is in long-term care but I want her home because I know her better than anyone else,she crys for that moment but the next moment forgets.So what do I do??????

  - Sandy

• January 7, 2012 9:46 a.m.

  My Mom is 92 and is in a beautiful assisted living facility. She is 20 min away but has become increasingly demented and at times is quite angry that I do not visit more often. I will be honest that visiting with her is not always pleasant as she is demanding and I often leave feeling as though I can never please her. I am an only child, work full time, married with 3 college age children. My mother often expresses to her nurses that she is jealous of the time I spend with my family and that I don't include her in all of our activities. This is not possible since she does not move well and gets tired easily. Not to mention that she has no filter and says things that are embarrasing. She won't answer her phone but yet complaines that no one calls. I am feeling guilty for not spending time with her but I find that I come home feeling angry, sad, wishing that I could enjoy being with her. My family is supportive but they feel that she is well taken care of and I shouldn't feel that if I don't see her at least once a week I shouldn't feel guilty. I am interested in your insights. Now that my husband and I are empty nesters I would like to spend more time with him. However, my mother makes snide comments about the time I spend time with him instead of her. I have a hard time ignoring these remarks. Thanks!

  - Gertie

• January 6, 2012 3:05 p.m.

  I am so grateful to all of you who write I have learned a lot. New years was great but have all of a sudden hit a block wall again with helucidations and not believing this is his house. How have some of you handled this? I did experience early on before he started taking the aricept over two years ago. I think this brought on by a reaction to a new bladder control medicine it happened so sudden when he had been doing so well.god bless you all!

  - Donna

• January 6, 2012 10:48 a.m.

  To GrannyBunny, I too am a sandwich generation person. When I read your post, tears filled my eyes because I am currently caring for my mother, who is in late stages alzheimers/dementia. I have been her caregiver since my dad passed away Dec 2006. She has lived with me now for nearly 2 years and her disease has progressed to the point of her being completely incapacitated. I get hardly any help from my brother who lives only a few minutes away. My daughter with 3 young children help me as much as possible. I am a real estate broker by career and have lost my builder client because "I have too many personal issues right now". Nearly everyday I feel the resentment and bitterness swelling up within me, because I did not choose this path! At times I feel as though I am loosing everything from relationships to my husband, kids, grandkids, friends and business. Sometimes I don't even feel like myself. I know I hardly smile anymore. I'm just so tired. But being a woman that was raised with values, character, and ethics, in the quiet part of my heart, I do know that what I am doing is the RIGHT thing. When it is all "said and done",I will have no regrets. My prayer for all the caregivers like myself is "Bless us Oh Lord indeed, enlarge the place of our territory, keep your hand upon us, and keep us from harm".

  - Jan

• January 5, 2012 6:04 p.m.

  To Bonnie.... If you "think" you may have problems, you May wat to consider being tested. It doesn't hurt, ad it isn't probably as bad as Fials in your classes.You could clear up your questions and your Fears. Nothing is worse than "getting up in the dark each morning". Life is much less stressful when "the light is on" I know, I have MCI, there are many things to do. Not only for your own health,but your Real Peace of Mind. I have learned one thing so far that has "stuck" when I talk to someone (family or friend) about my DX, they don't know how to respond... now I know why.. it's because it makes them look at their own lives,it makes them look at "Where They are" and "Who They are", and They get scared.(I get it now) I am scared everyday, but my HABITS are going to "keep me Floating for as long as God sees fit. Bless you in your decision in what to do.I am on our 45th class reunion committee and I am busy with the committee (they have no idea) so keep studying, even if you do have MCI you can learn good habits to help you stay active. I just ask that you find an excellent doctor (Mayo is good) and find out what to do after the DX, don't give up on yourself. God Bless all the Caregivers, I did it that too for 9 years with my father, and that memory still is bright as a light.

  - Catherine