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• Housecall
• Alzheimer's caregiving
• Living with cancer

• June 1, 2009 3:35 p.m.

  i am the caregiver for my spouse, jacqueling who has had alzheimers i know of since 2000. i have gone through all the stages and believe me the last one she is in now is heartbreaking. she just lies in bed with eyes closed. i hand feed her and she eats rather well. if i did not have hospice, i would be hard pressed to keep doing this. when we were married, we agreed to stand by each other through sickness and health. i am determined to take care of her and keep her out of a nursing home. i have had doctors urge me to commit her but i refuse. i just dont think she would received as good a care from someone who did not love her like i do. to take good care of a person you really must love them to do all the things a caregiver is required to do. sometimes i am lonely,scared and feel i dont know where to turn. because i haven't been the best husband during our married years, i am also suffering from guilt problems thinking my bad treatment may have caused her to have the disease prematurly. sometimes i feel like asking god to cure her or take her, and me with her. God Bless

  - frank bourland

• October 6, 2008 5:31 a.m.

  I have read through all of the posted comments, I believe, but did not find a comment that might help the following situation. A dear friend, who is caring for her 94-year-old mother with Alzheimer's, is having a difficult time with the following: my friend has moved in together with her mother and is running the household alone but, once her mother daily arises from her long sleep, my friend finds it nigh impossible to leave her side, the dear mother always calling her back to her side, usually with some nonsense comment/demand/request, despite my friend's patient objections or attempts to get away to attend to her tasks there at home. Anyone have a suggestion I might share with my friend, whom I get the impresion is nearing the edge, herself? Thank you.

  - stephanie

• May 27, 2008 8:32 p.m.

  I have my 80yr old mother living with me for the last 6 months. She was diganosed with AZH in 2006. The only way I could get her out of her home was to take her on vacation to Florida where it was warm and she was so excited. She wasn't eating and I got her meals on wheels but after awhile she wouldn't eat their food either. I knew she couldn't live by herself much longer, but she was so independent and wouldn't leave her home! My father died 3 yrs ago of cancer and my brother 5 yrs ago of cancer. I am all she has left. After getting to Florida in November 07, she looked at me and asked "who are you?" She doen't remember me or her grandchildren anymore. The hardest part if she wants to go home but she can't remember where her home is...she talks about her teachers and her paretns all the time. Repeats alot and starting to be mean and hostile. I know I have to start looking for a home for her, the doctor said she needs structure and don't try and correct her. Make her comfortable...it just breaks my heart that she doesn't know me anymore. I took her out for Mother's Day to lunch and while eating she asked me where my mother was(?) I cried inside.

  - Barbara

• April 23, 2008 1:53 p.m.

  My husband's mother has ALZ and is still in her home and a friend looks in on her occasionally during the day.My husband works long hours at his job so he doesn't get to help out much.I WAS helping a lot but someone called the State and reported that she wasn't getting the care she needed but at the time, she was, Anyway,my husbands sis came from Arizona and was very mad that the state was called in. She accused me of doing it and called me a "liar" when I said I didn't do it. She is a very vindictive person. She has POA,etc. over her and we can't do anything about it.Over the past 5 years she has had 2 broken hips,broken pelvis,and a broken arm from falls at home when by herself but my sister in law won't put her in a care facility and she really needs 24/7 care.Someone always has to be there to make sure she eats and takes her meds,etc. She hardly remembers anyone.She has a Lifeline necklace but doesn't know how to use it. According to my sister in law,it is just cause her mom is 89 years old and that is why she can't remember. The Dr's diagnosis was Alz but she can't accept that.She told me that the Dr. told her I had turned the case into the state. Why would I do that when I was caring for her? Now I only take her to her Dr. appointments and that is all. My sister in law can pay someone to care for her. I am afraid if something happened, it would be my fault and I don't want the blame put on me.I love my mother in law.I just don't want to be called a liar anymor

  - Donna

• April 23, 2008 10:34 a.m.

  For "Susan of March 27 post" - Has anyone addressed your concern? I don't see a posted comment here. Yes, in my research on Alz. all personality changes you have listed are quite common in the disease. Both of my parents have Alz. and have gone/are going through this. I took them on a vacation to see family members across the country and ended up at my house to "visit" me too, where they now live. I did not tell them they were going to live with me because it was the only way to get them out of their house. Yes it was deceitful, but I do have POA and I am RP for their SS -- which I have done legally and with their permission. So sneaking them to my home to care for them properly doesn't make me feel bad. Invite her to your home for a visit and just don't take her home. You'll fight for a while and she will be ugly...you have to decide how much you are willing to put up with. You can also go to court you know and become her legal guardian, if you live in the same town. Sometimes we have to take legal action against our parents in order to keep them safe against themselves. Do what you know is right for her...not what she says is right just because she is 87.

  - Sheri

• April 23, 2008 10:19 a.m.

  Both of my parents have Alz. My father is at stage 7, mother is about 5. My DEAR husband care for both of them while I still work. Father is 77, mother is 74. Father doesn't like to bathe but will if mother will wash him but the doc told us this is too dangerous. We know Dad should go to a nursing home but Mother argues this vehemently. the other day at the doc's ofc, Dad misunderstood a conversation and thought we were leaving him there (he thought it was a nursing home) so in protest he started to undress - he was outraged to be left, so he thought. He has a TERRIBLE temper...is the solution to sedate when we put him in a nursing home? That is so unfair to him. Suggestions?

  - Diane

• March 27, 2008 10:46 a.m.

  My 87 year old mother who has recently been diagnosed with alzheimer's has become mean and combative and is convinced that my brother & I have some kind of conspiracy against her. We are trying to let her remain in her house of 60 years as long as is safe for her because she lives alone & refuses to allow any type of caregiver assistance other than my brother or myself. She lashes out constantly and goes into little tantrums then like a child & then will sit by the window looking outside for hours, would not join us at the dining table for Easter dinner etc. Is it best to handle these emotions by letting her just do as she pleases while being abusive to others around her? My sister-in-law has recently refused to be surrounded by my Mom's explosive behavior & does not want to be around her when (almost half the time) Mom is acting out. I have not read or heard anything like this behavior from other people,what is the best way to handle a parent who is abusive to her family? We want her to be happy for as long as she can but it is getting impossible to satisfy her on any level. She won't allow anyone into her home to help her, she won't eat healthy meals & eats mostly cakes, pies, sweets and when I take her to the grocery she will not buy much of anything else. She will throw a tantrum in the grocery store if I try to get her to buy something other than a TV dinner or her sweets, saying she is an old lady now & can do whatever she wantsd.This is such a s

  - susan

• March 2, 2008 11:18 a.m.

  I am bringing my husband home again. He is now on hospice and I want to be with him, I do not want a stranger calling me to tell me my husband has died. He has had Alzheimer's since April, 1999 and these past two years have been the most difficult for him and our family. Our oldest daughter is so angry with me because I am bringing him home. What she doesn't understand is that I cannot afford to keep him where he is. But most of all I want to keep a promise we made to each other over 48 years ago--that we would be there for each other which ever one of us went first. I have arranged to have help 3 to 4 days a week. This is the most difficult time for our whole family. My daughter is asking her siblings to take sides and it is putting a lot of pressure on the family. Alzheimer's is indeed a devastating illness. Just want to do what I feel in my heart is right for my husband. Hospice will come to our home and continue their care.

  - Leticia

• February 25, 2008 10:29 p.m.

  Needing advice-just found this website Caregiver for my granny for the last 4 years. Also have 24/7 caregivers. My granny is losing her ability to walk-it's like her mind won't allow it, and then 10 minutes later, the ability is back. Swallowing is the same way. She is unable to care for herself in any way now-recently she was dismissed from the hospital after a 5 day stay and I was told she was in stage 5 of 7. She is 83 years old and I just don't know what to do next. We live in a small town and she has been able to live in her own home with caregivers, but her care is beyond us now. When does hospice become a choice? I don't want to do a nursing home because she doesn't function well mentally when she is away from her home. Help!! What do I do now to keep her safe, but also maintain her dignity and wishes?

  - cory boles

• February 18, 2008 2:49 p.m.

  It has been truly a blessing reading the posts from everyone. My Father who will be 89 this year has Alzheimer's, late stage. It has progressed fairly quickly but then again, I think he hid it well until he no longer could last year. We have two wonderful caregiver's who split their time for 24/7 care. My Father is now bedridden as of 12.26.07. He is incontinent and has those scary or comforting hallucinations and people visiting him for three months now at nite. He recently has become very agitated, combative and angry and he doesn't make any sense anymore in his communication. I don't think he understands us much anymore either. He doesnt'sleep well. He was "here" with us last month sometimes but since that time, he has been leaving us more each day. My husband and I visited him the other day and he had no acknowledgement of either of us. I was just told it is nearly time for hospice to come in. It will help my 87 yr old Mom during the transition coming up...me too. So

  - Diane

• February 14, 2008 12:23 p.m.

  I read this story and this what's going on with my dad for the last two years. This is like our nights go. Mom and I can't hand'e this anymore, so this is time for Dementia Unit. It wasn't the way we wanted, but it's not safe anymore. Lewy Bodies type of dementia leaves no choise.

  - MK, MA

• January 8, 2008 10:01 p.m.

  My husband, 88, has been a victim of what they assume is Alz. for 14 years. He was NEVER deranged. Would go months without saying a word and then come out with a very appropriate comment. He is under Hospice care now but survives every crisis. I HAVE ONE VERY IMPORTANT COMMENT. I KNOW THE RECOMMENDATION IS TO TELL THE PATIENT WHEN ALZ. IS DIAGNOSED. I AM NOT AT ALL SURE THIS IS THE KIND THING TO DO. I HAVE WATCHED SEVERAL PEOPLE JUST GO ALL TO PIECES WHEN TOLD AS THEY HAD SEEN THE CONDITION OF THOSE WHOSE CASE WAS FURTHER ADVANCED. Anyone who visits an Alz unit in a nursing home and sees the misery and condition of those pitiful victims would rather die. I AM SPEAKING FROM YEARS OF EXPERIENCE AND OBSERVATION. A friend cried for days when told. My mate would say "I don't have that bad thing." And we would spare him the facts. Ginnie S.

  - Virginia Swanson

• January 4, 2008 10:26 p.m.

  MY DEEPEST SYPATHYES TO YOU IN REGARDS TO YOUR HUSBAND. I AM TRYING TO EDUCATE MYSELF ABOUT THID DEVASTATING ILLNESS EVEN THOUGH NO ONE IN MY FAMILY IS AFFLICTED. I FEEL THAT IT IS IMPORTANT THAT PEOPLE LEARN ABOUT IT REGADLESS IF A FAMILY MEMBER OR FRIEND HAS THE ILLNESS OR NOT.I KNOW YOU DID EVRYTHING IN YOUR POWER TO CARE FOR YOUR HUSBAND. IT MUST HAVE BEEN HARD TO SEE HIM GO TO AN ELZTIMER UNIT. BUT REMEMBER IT HAD GOTTEN SO YOU WERE NO LONGER ABLE TO CARE FOR HIM AT HOME.AGIAN I WISH TO EXTEND MY CONDOLENCES TO YOU.CHRISTYH

  - CHRISTY H.

• January 4, 2008 12:18 p.m.

  My husband was diagnosed with alzheimers in 2000, I kept him at home until 2005 , when he fell and broke his hip and the VA doctor wouldn't recommend that he go home again, the sleep deprivation I had was the worse of the taking care of him at home....He is in a nursing center and at times I question whether he really has alzheimers, he seems so with it and other times I know there is something wrong...How do you ever get to the point where you don't feel guilt for putting your loved one in a nursing center.even though you can no longer take care of them?, I guess we live with whatever decision we make....this is the hardest decision I have ever made in my life, even though I visit him every day.

  - Barbara

• January 2, 2008 12:45 p.m.

  My father has alz and my mother takes care of his needs most of the time. Recently, my mom got sick and had to be hospitalized. I took time off work and drove to their home several hours away. Dad got very angry with me telling me I was trying to take over the control of his home. He has dillusions and is very difficult to handle. He is violant and angr a lot of the time even with my mother. How do I know when it is the time to get additional help? He is very proud, and is always telling us how smart he is. This is so hard.

  - Karen

• December 19, 2007 3:25 a.m.

  My husband has been in a memory care facility for 5 weeks and although I feel guilty for not being able to care for him he is much better off. Once I had made the decision, which was very difficult for me, two of our grown adult children objected. Three of the adult children were okay with my decision because I was really tired from the constant care. My heart was more broken by the kids than by the taking of my husband to the care facility. I go every day that I can and he does not really know who I am but he likes me. He has never been a fighter and he does let them bathe him. So I think we are on the right road and when we have another boulder to jump, hopefully we will be ready. My husband told me early on when first diagnosed that I was not to care for him when the time came to put him in a care facility. I think that made it easier for me. Always the considerate man.

  - Nan

• December 5, 2007 11:49 a.m.

  www.alz.org Lots of information, 24 hour help line, local resources and support group information. Thanks for sharing your stories. You are all helping others!

  - Ruth Almen

• December 4, 2007 8:15 p.m.

  I think the most difficult times were when I saw that my father had lost, yet, another of his perfectly done skills. Each time it was a kick in my chest and I was feeling down for a few days, then I got accustomed to the revised way of helping him. The first time he cried about his inability to turn on a bathroom faucet broke my heart. Just writing it triggers that very keen moment. I took him into his room, sat him down, and we talked freely about the inevitable...and how lucky he was that G-d was taking him back from where he came from, and so gently...without physical pain, just the pain of his pride. So that is how it was over the four years that I had him with me. It was quite a 5 year ride for me, stressful, inconvenient, limiting, yet I wouldn't trade those years for anything different. I was a good daughter. I kept my promise to him that I wouldn't put him in a nursing home. Our senses of humor got us both through this final passage. He was 94; my daddy is deeply missed.

  - Barbara Samuels

• November 29, 2007 8:15 a.m.

  Wow I totally relate to each and every post. My Mom is 87 and in the late 6 or early 7 stage. She can walk a little but needs assistance in going to/from the bathroom and each day has become a struggle. She is living with me, her baby, and my husband in Mass. I have 2 brothers and a sister who all live in Alabama(siblings are all at least 12 years older). I am now faced with making a decision of taking her to Alabama to a Nursing home or taking a leave of absence from my job and risking her dying here. I know the facility there is wonderful, matter of fact my Mom worked there for 15 years and it is an awesome place however, it is still the Nursing home and I promised her that she'd never have to go. I know that when I take her I will feel such guilt but I don't know what else to do. I am the one she looks for, asks for and I just pray for the strenght to do the right thing. Janet

  - Janet

• November 27, 2007 11:53 p.m.

  I can totally sympathize with each one who is a caregiver of someone with any type of dementia. My brother and I were the caregivers for mother until he died suddenly from a massive heart attack almost two years ago. I had mother in my home most of the time, but my brother would relieve me by taking her to his home for a week or more at a time. My brother was truly my best friend. Then he got sick and died. I miss him so much. Mother fell and had a traumatic brain injury about a week after my brother died. She never fully recovered from that injury and has been in nursing center since March 2006. She and I both are blessed by the fact that she is always smiling and giggling about everything. My husband and I go to see her every day, and feed her evening meal as she can no longer feed herself. She eats great and always seems happy. She can't communicate with us and we aren't sure she even knows us now, but she gets so excited when we get there so maybe she does know us.

  - Mary

• November 27, 2007 10:16 p.m.

  It has now been three weeks since I have taken my husband of 50 years to a care facility. I think it is a good thing I have done. He seems to be better satisfied in his world and in not having to keep up in the world as we knew it. I miss him so much but I can see that he is better where it is quite and activities are scheduled. He has no trouble with letting them bathe him and help him with whatever he needs done. I am so grateful to have found such a wonderful place. Nan

  - Nan

• November 27, 2007 11:32 a.m.

  I am a friend to a family with a family member with Alzheimers. Since I have much experience in the field of caregiving, the daughter asked me to move into the home and provide 24/7 care for her mother. She is unable to be with her mother because she has a husband. I have been here for about a year and a half, and things seem to be going alittle differently than I was first promised. I am relied more and more on for all the care. Her daughter visits once a week for about two hours. The mother has one son who lives about 1700 miles from here, so he can't help either. I am being paid room and board, and a stipend out of which I must pay my own taxes, as they said I am selfemployed. They have long term care insurance for their mother, but have chosen not to use it, because it would require running this home like a business. I got nothing in writing, and I don't want to let this lady down as she is dear to me, but I don't know how to get any help. Suggestions?

  - Christine from California

• November 26, 2007 12:52 a.m.

  My Dad passed away from cancer two years ago, and a few months after my Mum was diagnosed with alzheimers. It was like losing both of them at once. My sister and I both have small children and did our best to keep her at home, but eventually put her into a lovely resthome. I must admit, I did feel very guilty about it at first, but now when we go to see her, we have a wonderful time. We take her out to lunch, go shopping to just sit and talk about the old times. When she was at home, most of our time was spent cooking, cleaning, shopping, and running errands. We get to have much more quality time with her which is good for everyone involved.

  - Stephanie from New Zealand

• November 22, 2007 10:18 p.m.

  D. Cooper, I can relate to your situation. It's so hard when family members won't help. My mom has alzheimer's and my Dad does his best with her--she is urinary incontinent and wears diapers but he still takes her out to restaurants and outings. I can see how tired he gets with her moods and hygiene. I help them a couple times a week and I have a husband and son who is 4. My mother's sister lives 5 min. away but will not see her alone as I requested. I thought she could provide a little companionship to my mom, but she only sees her in a group dynamic or with their husbands. This enrages me. My aunt and I are now estranged. I never expected her to do caregiving. I only thought she could sit with Mom and look at pictures or tv. once in a while. What do I do with the rage towards my aunt? My husband has forbade me from talking about her because it is destroying me. I just don't understand this supposadly loving sister not visiting my mom. It sickens me as much as this diseas

  - Jen

• November 21, 2007 2:06 p.m.

  My Dad is gone and my Mom has been dianosed with A;zheimer's Disease. My sister who lives in the same town as my mom has moved in with Mom. While my sister was asleep, Mom managed to leave her house and the neighbors found her at 5 AM in her backyard, barefooted, in her PJ's, with an arm load of clothes trying to "GO HOME". Thanks to my sister's husband, we have a device set up to catch Mom leaving her room at night. Mom has good days now that she is on medication but the doctor said that she has had this disease for at least 5 years. How long do you think it will be before we have to put her into a care facility and how long can we expect to keep her on earth? We are concerned about her future and need to know how to provide for her. How much does a care unit cost? Just trying to be prepared. Thanks.

  - Cindy