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• Housecall
• Alzheimer's caregiving
• Living with cancer

• May 31, 2008 4:53 a.m.

  There are others here that understand how painful caring is when nothing may be accomplished or done. I am in Arizona, if my mom doesn't take her medication it is not a good outcome. If the medication isn't regulated safely, also not a good outcome. We have not been to Mayo's Arizona, but I wish I could get her out of the house to go there. I don't know if missing so much of her medication is dementia or something else. I pray there is enough time to get her help, that some how she will get the help she needs. The entire world is against me on this -----for simply trying to do the right things for her. Blessings to all of you, we are trying so hard because we do care. Blessings.

  - -Alison

• May 29, 2008 10:21 p.m.

  My aunt and her husband live alone in another state. Both have dementia. They don't have any children. I am the closest relative to my aunt. She has friends who go by and check on them but this is not enough. They need someone to be with them fulltime because they are not taking their medication and becoming a danger to themselves. My uncle has a sister there but she is not able to care for them. They won't allow anyone to come in to their home to assist them anyway. Can someone give me some advice on how to handle this situation? I have been very close to them all my life but I don't know what to do. I am married and have 2 kids at home and 1 in college. If they were here it would make a difference. There are 5 states between us.

  - lynnette

• May 28, 2008 9:22 p.m.

  My mother is in early stages of dementia. I can still laugh and say who are you talking to? Somone else in this room besides me? My brother refused to acknowledge that there is any potential problem. My sister is ready to send her to a nursing facility. I am still happy that she can be in her own home-10 steps from my back door-and I can be her caregiver.

  - nene

• May 28, 2008 11:16 a.m.

  How do you get ready for a parent's dementia? And how do you prepare that person for what you see is quickly approaching? My husband's father is in his 80's, good health but becoming forgetful and repeats conversations he just recently had with us. His father had dementia when he was in his late 80's and lived into his 90's. Right now, my father in law cannot see that plans need to be made, a power of attorney written, a will finalized, a place chosen for a future move, and he still has his car keys and drives out of town on trips that creates more worry. How demanding must we be towards him in order to secure his safety? Will one of his doctor's help us convince him to get into a facility before it becomes an emergency? My husband is 8 hours away from him and his sister lives in town but was burdened many years in caring for their mother before she died last year. It is very hard for out of state family members to provide the necessary support but we do our best and provide financial help as needed. We just need to convince his dad that preparations need to be done now.

  - dls

• May 27, 2008 3:03 p.m.

  My mom has been in a memory impairment facility for two years. Her dementia is related to alcoholism. We tried to let her live along for a trial a year ago, with caregiving services,but she became very stubborn with her caregiver and basically demanded they bring her to buy alcohol which she was off of due to living at this wonderful impairment home. It's now two year total since she's been there and she's gone down hill, mostly emotionally through depression but still has short term memory loss which would put her at risk being home alone. She is angry and bitter at me and my two siblings. I feel horrible guilt but try to remind myself that it's I'm not responsible for her past lifestyle and behavior prior to us intervening. This has brought me and my siblings closer together, I must admit, which is good because we have never been a close family. We just wish my mother understood that we are doing this for her safety and well being and that we love her.

  - Liz

• May 23, 2008 5:06 p.m.

  My dad is nearing the end of his journey with Alzheimers. For a while I was the only of his children that helped my mom with him. He requires 24/7 care so my mom and I stay pretty exhausted. I read some of the other posts and decided to talk to my brothers. I told them that I loved them, but was becoming resentful that they were not helping us out. I told them that I wanted us to rally to each other, not let this push us apart. I am glad to report that one of my brothers has told me that I made him think hard about the way he as been acting and he has promised to jump in and do his part for his family! Thanks for giving me the courage to fight not just for help but for our family relationships.

  - Ann

• May 22, 2008 10:12 p.m.

  My Mother had dementia for 8 years before passing away from kidney failure. Looking back, I must say that the best thing we did for her was to find a memory care center for her to live in where she had activities all day long. There was music, current events, guest speakers, games etc to keep her busy and her mind active throughout the day. She saw a geriatric psychologist who prescribed medicine to keep her on an even keel. The care there was wonderful. Visiting her was a pleasure, and a lot of times I would forget she even had dementia when I would visit her, because we had such a lovely time together. She was the best Mom in the world, and I feel so fortunate that she could live out her days with dementia in a place where she and I both felt she was in a safe environment. She was always there for me when I was young and then too when I was raising my children. I couldn't do enough for her. She would always feel so bad that I had to do things for her. I told her she was always there for me, now it was my turn to take care of her. I would encourage everyone to visit their loved ones with dementia, because they really need to know you care. And, even if they can't express it, it makes them feel so happy when you visit them. I wish I could visit with my Mom just one more time. Luckily, when she was in hospice we got to tell each other how much we loved one another, and she was so coherent when we were saying it. I will remember that always.

  - Esther

• May 21, 2008 6:15 p.m.

  My mother was diagnosed with dementia shortly after my Dad passed away in 2001. I moved home to help with finances and she continued to deteriorate rapidly for the next two years and then we had to put her in a care facility. There are five siblings and only three of us took the burden (gladly) of caring for our mother. I always thought we were a close knit family and was dumb founded when my brother and other sister could not bring themselves to even visit my mother. We were able to take her out of the care facility after she was regulated on medication and she lived with my sister for about 8 months before she got too bad. Those were the most precious eight months! We've always had a good sense of humor and even in her dementia, my mother retained hers. People react to stress and adversity in many different ways. Even now, I can't fathom not "being there" for my mother the way she had always "been there" for us. For my two sisters and I, it has made our bonds of family and love even stronger. My brother and other sister have to live with themselves. It was an education!

  - Kate

• May 21, 2008 9:07 a.m.

  My Dad has been in a nursing home for the past year. Before that, the 6 of us kids took turns helping Mom with Dad's care and did it willingly, with love. Some did more than others, but everyone did the best they could. There's no doubt this situation stresses any family and causes resentments. Things have improved since Dad's been in the nursing home because the day-to-day burden of care is off the family and especially Mom. What everyone should understand is besides morally, children do not have an obligation to care for parents. You do it because you want to and you can't make someone behave the way you think they should. The siblings who don't help - is it really that much of a surprise? And I don't think it's fair to expect grandchildren to provide care to a grandparent. That's just not right. The point is, learn a lesson here and plan for your own future. Get your Health Care Directive in order. Plan for your Power of Attorney. Buy long-term care insurance. Talk to your family about your wishes. If you don't plan ahead you could find yourself in the same situation. Who will take care of you?

  - Sophia

• May 20, 2008 9:44 p.m.

  I was the only daughter in the family, having two older brothers. Mom was a widow when she was diagnosed. One brother stole from mom when she was in the mild stages, and lied to her and used her for a money tree until I got hold of the finances. The other brother told me I was a martyr for taking care of her, and to dump her in a care center. He told me since I was doing nothing important anyhow, (working-no family-lived close) it was my problem. Actually, since there was no cash for a care center, it was not an option. I would not have done it even if we could have afforded it. I moved back home and we tightened the belt and we lived off mom's ss and some odd work I could do out of the house. I did not put her into a care center until 7 years later when she had a massive stroke and I could no longer handle it, move her, on my own. She died about 6 months later, and she knew me until the end since I saw her so often. She died in 1997. My dumb brothers, one never visited, the other did twice in all those years. We do not see each other, and I hope to never see their insensative and cruel selfs again. For me, my mom was my best friend, and I gladly took care of her. I loved her, and miss her to this day. Her alzheimers was the best of times, the worst of times. The toughest thing I ever did, but the most satisfying. Miss you, mom.

  - amz

• May 20, 2008 7:29 p.m.

  My Dad had Alzheimer's and has now passed away as of 2000. But my 2 brother's and myself were always onboard with Mom as far as decision-making, even though they were both out of town and I was more in proximity to my parents and so I was her "right-hand-man" so to speak. She had the day to day struggles all spouses have in this journey, not easy. But there was no squabbling in our family, there was cooperation. I now facilitate a Support Group in my church. I'm not an expert ofcourse, I just guide. But in reading these blogs, I didn't read anything about Support Groups or help through the church one might attend. What about some respite help, some companion help? These are things, small things yes but would enable an outlet for a short time. And please joint a Support Group. Find someone to stay with your loved one so you can attend. You DO owe it to yourself. The depression I'm reading here is so destructive to yourself. Call your church, I'm sure there is someone there looking for a way to help, waiting to be asked. It certainly is a heavy burden, but it could maybe be lightened just a bit. You can't be bothered with what others will not do. Don't even deal with that. You can't change it. You're too busy with other very needful things. Just go on with what has to be done and a big part of that is keeping you HEALTHY.

  - Diane

• May 20, 2008 6:02 p.m.

  We were always a pretty close family and when Dad was diagnosed with Alzheimers at first nothing changed. When he started to progress however everthing changed. My brothers avoid calling or visiting my mom. They say that they want to remember him the way he was, but it has really put a burden on me and my mom. She is so stressed out and exhausted from taking care of him 24/7. They can't afford a nursing home and he hasn't been able to qualify for any aid. I work full time, but I come over on my days off and help her until school is out each day. My brothers don't feel compelled to help at all. On Mothers day one of my brothers waited until late that night before calling my mom and then picked a fight with her. Her feelings were so hurt that she cried herself to sleep. My dad can no longer walk or stand, is stone deaf, and 100% incontinent. His food has to be blended so he can eat. He keeps having mini strokes. He also has been getting more and more aggressive. He wakes my mom up several times every night. Since he can't hear he just keeps yelling your name until he can see you. My mom has given up on asking my brothers for help now and is so upset with her own offspring. She said that she is glad that I help her so much, but can't understand how she raised her boys to be so selfish. I am married, have 2 small children, and work full time. Only one of my brothers is married but neither are willing to even sit with Dad so Mom can go to the grocery store.

  - Rachel

• May 20, 2008 5:25 p.m.

  I am an only child and divorced, so when my mother started exhibiting signs of Ahlzeimers/dementia, I moved her in with me. It is very difficult to care for someone 24/7 whom you love so much, but questions who you are some of the time. I have grown children, but my daughter and her husband take her out to eat once in a while, one of my sons comes often to visit and the other son is 'very busy'. It saddens me to watch my mom deteriorate so quickly, she's 90 and I know I've been lucky to have her so long, but I know too that I need a break from this. She is reluctant to have a stranger come in to care for her for a couple of hours. How can I get my children to understand they are not doing enough?

  - Anne

• May 20, 2008 5:01 p.m.

  Ninety five year old lady with a son managing her affairs thinks she is happier in a run down home in a crime ridden neighborhood rather than in a assisted care center which she has approval for. Other brothers and sisters feel like strangers and just do the minimum to help. Sad situation created by a selfish, stubborn son. The damage he has done to the family is extreme and will most likely never heal the wounds. I am a son in law in this situtation and see the stress caused by the frictioin. The situation has permanently damaged the former good relationship amongst these brothers and sisters. Sad but true.

  - Don

• May 20, 2008 11:42 a.m.

  I too am helping care for a parent. I have 4 brothers who all make excuses as to why they can't help out. My mom is having health problems as well from not taking care of herself while tending to my Dad who has severe Alzheimers. She finally decided to try to get him in the VA assisted living/nursing home only to be told that they have to evaluate him to see if they think he is ready to go, then it will be another 6 months if he gets approved. I spend my days off from work at her house doing whatever needs to be done and leave just in time to pick up my 2 young children from after school. I love my parents, but I have been burning the candle at both ends for over a year. I am physically and mentally exhausted and my kids miss spending time with me. On top of that there is no light at the end of the tunnel so to speak. My mom is exhaused as well and I know I can't leave it all on her so I am taking it one day at a time. She also keeps telling me all of the stuff that she wants me to help her with if she can finally get Daddy the 24/7 help he needs or when he passes. I want to continue to do what I can, but I feel so trapped. I wanted to help out my parents, but I guess I thought after Daddy got into the VA hospital I would be able to get some of my own family life back. My husband feels like I am putting my Mom and Dad first because I am. I don't think I can keep doing it all, but how do I choose what to let go of when everything is important?

  - Dee

• May 19, 2008 2:35 p.m.

  My husband has depression and dementia and is in denial over it. He blames me for his condition and it is very hard to keep positive and focused when dealing with his needs. He can get verbally abusive and it is very difficult to get him to believe me. It is very lonely caring for someone in the throws of this disease. You remember who this person used to be in order to feel the love again, but that only makes me even mre lonely. I have found that having a therapist has helped me deal with my sadness while I try to be the best caregiver I can be.

  - Lori

• May 19, 2008 10:45 a.m.

  My mom has cancer and my dad has alzheimers and I have been devastated just as much by their diseases by the absolute disgusting self-centered attitude of my brother and nephew regarding helping with my parents. My nephew although young and strong and working a four on four off shift, has visited them once in the last two years (since they moved to my community) - this is a distance of maybe 20-30 minutes by car. He let them buy a huge Easter brunch so he could show off his new fiance but hasn't been seen since. My brother shows up maybe once a month to let my parents buy him dinner. In terms of the day to day struggles, taking them out for lunch or somewhere nice like the beach for a walk or just sitting there talking, he is no where to be found. When my dad fell and was hospitalized, when I phoned my brother saying we were in the hospital, his reply was, well do you have to be somewhere else or something? The appropriate response was, what hospital and I will see you there. I am disgusted by them both and will write them off when my parents pass away. I would do it now but it hurts my mom to see my mad at my family so I swallow it now. Crisis sures shows what people are all about doesn't it? Luckily I have incredibly supportive friends and grown sons who help me and my parents. They are my true family and my brother and nephew are just relatives.

  - Alei

• May 19, 2008 10:02 a.m.

  My mother lives with us (my husband and I). He is very patient, but I am finding that my mother is becoming more and more demanding. I take care of everything (finances, healthcare, her meals, cleaning, cooking, etc.). My brother lives close by but is only in the picture periodically. My mother resents this, but what can you do? I have no time to myself and all my efforts to get my mother involved in activities (she is still well able to be involved) come to nothing as she is very critical and gets easily discouraged. I'm not too sure where to go from here. I cannot leave my mother alone...she goes with me everywhere and I'm finding that I resent it. Any suggestions?

  - Randi

• May 18, 2008 9:08 a.m.

  My husband's dementia has turned my adult children's concern to my health, since my husband is in an asst. living facility they have focused on me taking better care of myself since I have been a caregiver for so many years and neglected myself. They don't seem to worry about their Dad as much since they know he's in a safe place and happy where he is. I was finally able to get over my guilt of having to place him for his own safety and 24/7 care. I am now taking better care of myself. My children live all over the country and come to visit as often as possible and when they do we all spend quality time together as a family. The decision to place him outside the house was a difficult one for me but it has proved to be a happier one for all of us. He's in a wonderful facility that is always having entertainment and a full activities calendar. My friends and i go up all the time for one party or another. If I'm unable to go they will go without me to show their support for my husband. So sometimes it's not a bad thing to remove the patient from the house, Care giving at home is very stressful for all concerned.

  - Marge

• May 16, 2008 6:09 p.m.

  Our family has had a hard time with relationships and what role each child should play in the care of a parent with dementia. We have had some siblings feel they should avoid contact with, and association with, both the surviving spouse and with other siblings. Each of them are dealing with the loss of a parent in their own way. Usually when a decision has been made in the care or medication each sibling would have acted differently. It has been hard to keep lines of communication open, as everyone is in some state of mourning. Tempers flare, and feelings are easily hurt. It is hard for some to understand how the surviving spouse feels, and that they are in need of family support now, more than ever. Hopefully this trial will bring us closer, but in the meantime it is driving everyone apart.

  - matt

• May 15, 2008 8:53 p.m.

  I wish that I could say that my mother's dementia was bringing our family closer together, but I find that her parents have been in denial about the changes occuring in my mother for so long that they are unwilling to accept that she has this disease. Instead, they constantly tell her she is talking and acting crazy. My mother is reacting to this by being paranoid that she will be locked away in a "psych ward" or that her parents are out to get her. It is also difficult to for other family members to understand that her paranoid rantings and angry outbursts may not be reality, but they are real to her when they occur. It is difficult for them to accept that she is a person who needs love, understanding and forgiveness for the things she might say or do. They also seem to think that since I am a medical professional, that I or my colleagues will find a quick cure, be able to provide constant care and supervision and financial support while my mother has no insurance and no assets of her own. It is also very difficult for my spouse and his family to be patient and understanding now that my mother has come to live with us. I hope that in time, we will come together as a family as the turmoil distresses my mother even more.

  - tracy

• May 14, 2008 1:08 p.m.

  Our mother has dementia and currently our father is taking care of her in their home. I am one of eight children. Some of my siblings live in the same city as my parents and the rest of us live within a day's drive of "home". We all do what we can to help and wish we could do more. Some of us help with financial decisions, Medicare Part D, etc. Others help with home repairs, tending the garden and lawn, etc. One sister accompanies our mother to doctor appointments. Some of us still have children at home and in school and cannot get away to help our parents as much as we would like. It would be easy to rely too much on the siblings who live in our hometown -- but they do not want to shoulder more than their share of the burden just because they live nearby. This is understandable....and so we do what we can to help our father and mother while not keeping tabs on who's doing what or who's not doing their share. So far we have managed to keep peace in the family, but sometimes it is difficult. We all have hobbies and interests that we enjoy more than spending time with a mother who may or may not know who we are and who can no longer carry on a conversation. It is very stressful for all of us, but we know that it is even more stressful for our father as he has to live this life 24/7 and we are there for only hours or days at a time. We have to remember that our mother is the one who is ill, but it is our father who most needs the respite, conversation and support.

  - Lydia