Quality CareFind out why Mayo Clinic is the right place for your health care. Make an appointment.
Meet the StaffFind a directory of doctors and departments at all Mayo Clinic campuses. Visit now.
Research and Clinical TrialsSee how Mayo Clinic research and clinical trials advance the science of medicine and improve patient care. Explore now.
Visit Our SchoolsEducators at Mayo Clinic train tomorrow’s leaders to deliver compassionate, high-value, safe patient care. Choose a degree.
Professional ServicesExplore Mayo Clinic’s many resources and see jobs available for medical professionals. Get updates.
Give to Mayo ClinicHelp set a new world standard in care for people everywhere. Give now.
Mayo Clinic offers appointments in Arizona, Florida and Minnesota and at Mayo Clinic Health System locations.
Subscribe to Housecall
Our general interest e-newsletter keeps you up to date on a wide variety of health topics.
Subscribe to our Alzheimer's Caregiving e-newsletter to stay up to date on Alzheimer's topics.
I have poured over each and every response to my last entry on dementia and family relationships. My heart goes out to each of you struggling right now.
Many of you wrote of the conflict, pain, sadness, and resentment occurring within your families. Thank you for your honesty and candor. I have to believe that many who read these words will find some comfort in knowing that they are not alone. I know you are doing the best you can with the situation you have been presented with.
Others of you wrote that you have come to a place of acceptance and peace on this journey and within your family relationships. Here are some of the ways a few of you have coped that I feel are worth repeating:
On that note, I ran across a letter I received from a woman in my support group. She was a caregiver for her mother and experienced a strained family relationship. She wrote:
"Unless you have a loved one who suffers from some form of dementia, you will never know the suffering that transfers to the entire family and mostly to the caregivers. The suffering is life altering. However, the suffering is manageable when you find out you are not in this alone. Even though I could not keep my own family at peace, I became a part of another family — a wonderful, loving, compassionate, and supportive family. This family (my support group) gathers monthly to give each other the courage, strength and support to go on for another day. We learn how to break down difficult times to manageable moments. Right now, they are my closest family, we share an incredible bond."
Selecting "Submit" signifies that you have read and agree to our posting guidelines.
Does anyone have experience with contracts or agreements when an adult child (one of several siblings) moves in to care for Mom who has dementia? Lots of family stresses after Dad's long illness and death, financial problems, etc. To keep Mom home, I'm moving in. I don't expect to be paid, but I do what to be protected.
My father in law suffers from mild dementia along with other health problems. He is remarried and his wife is not well herself and lives with her daughter. He now lives with us. My father in law was very underweight & would not eat and because he was depressed & weak he slept alot. We got him to eat again (he is an all day snacker), interact with us and do some very light exercise. His short term memory is pretty much gone and he recalls the first 15 yrs of his life precisely. He recently "forgot" how to walk and complains of hip pain. (xrays were normal) He could not use a cane but has gotten use to a walker. We are afraid that he will never walk by himself again. Our biggest concern is the removal of his pj bottoms, underwear and poise pad after we have put him to bed. It seems to be a constant struggle with him and as soon as we get him redressed...off they come. He is pretty smart and waits until no one is around. I told him that he has accidents and he needs to keep them on. It is pretty shocking to see your father in law in his birthday suit when you least expect it. He never slept without clothing and we want to know how to stop this. Any suggestions would be most helpful!!! I know that someday we will all laugh about this but it can be trying at times being a caregiver. We love him and feel his place is with us and he so sweetly thanks me on a daily basis for taking care of him....if he could only leave his clothes on at night.
My grandmother has been in a nursing home for almost three years with Alzheimer's. While I have managed to accept the fact that she no longer knows any of us, I was shocked yesterday to experience she now has uncontrollable laughter. It is spine chilling to me. It sounds like someone going mad. She would be mortified if she knew that she was doing this. Is there anything we can do? Any advice would be greatly appreciated.
Debra, you can call the Alzheimer's Assoc. hotline and try to find a local support group. Reaching out to others who have gone/going through it will help so much. I have to say that my mother did come to a place of peace after several years of trying to mask her symptoms, had a personality change and was suspicious but we are blessed that she isn't combative or difficult.Really it is and has been the family's inability to cope with the reality of the diagnosis and mental decline of my mother that has been the most severe and long lasting problem.
my mother was diagnosed with moderate dementia last year. she swears that there is nothing wrong with her and that her doctor is crazy. my father does not understand the severity of her dementia. i see my mother struggling to understand what is going on with her. where do i start?
My mother may have had Alzheimer's before my father's 1998 death but I and my 6 siblings attributed her odd behavior after his death to grief. Finally 5 years later my sisters and I insisted she see a specialist and her diagnosed was vascular dementia. Immediately upon returning home after a year of working in the Middle East my family insisted that I become my mother's caregiver which I resisted because I was exhausted. I caved in and after only 5 months I was drained completely. Now it's been years and I am still struggling to regain my health and financial stability. My family has ridiculed, criticized and ostracized me. The Alzheimer's Association 24 hour hot line was a lifeline but I still swing between rage and utter exhaustion on bad days. My mother is in a safe place but the family attitude is unbearably painful. I have read in an Alzheimer's Assoc. booklet on end of life issues that often families do come together when it's all over. If anything the loss of my family's affection has made me more empathetic to others and has pushed me in new directions. I am no longer so impressed by artistic talent, money or success including those people of high achievement in my own family. I admire more some of my mother's caregivers who make little more than minimum wage but treat her with loving respect. Somewhere I read that Alzheimer's is a "family" disease and indeed it is.
My mother has A.D. and my 91 year old father is her 24/7 caregiver with my sister and me helping on a regular basis. This is wearing him down, but he's been resistant to our suggestions that he should consider placing her in an Alzheimers facility. Are there guidelines that we could review that would help us know that we've reached that point, if as I suspect we have, that would help him make a decision with less guilt than I'm sure he is trying to avoid?
I first want to say how sorry I am for all of you with loved ones suffering from Alzheimer's. I know for you the pain is sometimes so hard you want to give up. I only wish my father had had the support that is available these days. ...
My father was an Air Force Col., diagnosed when he was 45 years. I was just 12. My brother, two years older than me, and I were not equipped to handle it. My mother chose to go along, as was perhaps typical of her day, as if all was just fine. ... And so, we did not deal at all, really. Instead we watched with one eye shut, as my father deteriorated.
Eventually, long after my father was admitted to the Alzheimer's ward in Brockton, bed-ridden and for the most part unaware, I did cry loud enough to be heard by a few... walked the Appalachian Trail in his honor and to raise money for the cause. ... His doctor did put the money into a fund which I'd like to think helped somehow. Though he never returned my calls when I returned from my walk. ...
All this said, times have changed. Thank God. I would have given anything for the support there is now. Just a word from another who is suffering from the same thing. Patient or caregiver. Doctors too!
Although life is okay for me now, 15 years after my father finally passed, I have never fully recovered. I keep saying "what if. ... if only. ... "
I guess what I'm saying is to all of you out there: Don't turn your backs. Get help and support, be present, and talk about what's
Mom and Dad were living at home until his recent hospitalization for congestive heart failure. She suffers from moderate demetia, he has his wits about him, so to speak. I helped them move into assisted living facility in my town. They are quite dissatisfied. She wants to go home and is cold at all times so leaves the air in their room on 85, which makes it difficult for Dad to function. He is very submissive to her wants/desires so feels that he needs to take her back home--to a town 30 minutes away from me, the only caregiver, although he is currently trying to regain his strength with walker/cane and she is unable to cook, clean, bath at home and runs off any outside caregiver.
I go to see them every day, at which time they set in on how they must go home, this isn't working, it is too cold here, etc. I am also holding down a fulltime teaching job and taking care of their finances which are scattered over several towns, generally doing their secretarial bidding every day after work. I am at my wits end, my husband has had it, and now we want to undo all of the extensive work involved in getting through the summer hospitalizations and move to the assisted living facility. I guess I am asking if anyone else deals with this--one person with dementia enabled by a spouse who is unwilling to admit the obvious and how do you handle it?
The last time I talked to my mother was on the phone 3 years ago. Her memory was foggy, but she knew me. I was in prison from '07-'09, and she now has totally lost all recognition of family members. I will be going back to see her in 3 months and I wonder if there will be any kind of sign of her recognizing me? I'm sure she was worried about me and wondered where I was, when her memory was still okay. I'm hoping for just a look in her eyes that will tell me she knows me. I feel guilty for moving away from her and not being for the bad times when she was still living in her own home.
My mother has alzheimers disease and recently had a ministroke. she had an mri and they found brain cancer. she is still in good spirits and fair health. my question would be," should she be constantly changing households multiple times during the week between my 3 sisters and my self. I am her son and I certainly don't mind taking my mother during the day, but she is very anxious and unsettled at the end of the day. I live in an upstairs duplex 3 flights of stairs and my mother wonders, understandably,but I'm uncomfortable with the overnight visits afterall she is a proud lady and if some unfortunate accident (bathoom type) should occur she'd be devastated to have a man clean her up . Am I off base.
My mother is in the last stages of alzheimers. The road has been a very hard one and it is getting harder. My mother was diagonised 6 years ago and watching the disease progress is like lossing her one piece at a time. My father was the main caregiver with help from my sister, myself and outside agency-we are able to keep her at home. This past October we lost my father to a fatal "scooter" accident (my father's way of avoiding the high gas prices). My father was in a coma for 6 days and we held his hand until he took his last breathe. The loss of my father was a blow to everyone. At the time of the accident, my mother did not know her family-except we were friendly faces she trusted and totally dependent on for care(she had lost ablility to walk,stand,or move her arms or legs). My mother stopped talking many many months ago except for the occasional words. At this point, my sister nor I have not had the time to grieve over the loss of my father because we had to jump in and take care of our mother. We still have her at home with round the clock care-which is a blessing we are able to provide this. In the last week, the doctor has stopped all of my mother's meds focusing on pain control and her decline has progressed to the point where the frequent periods of blank stares are becoming longer. Our hearts are broken-watching helplessly as both parents die. Time is precious-this is a heartbreaking disease and ever moment you have is a blessing.
I have noticed that my friend who has alzheimers responds extremely well to head massages when he is agitated. He can be quite aggresive but the massages really reduce the frenetic behavior. Is this normal care for alzheimers and are massages often used in alzheimer homes?
To Ann May 28, 2008 and all others that this may help.
I totally agree that there are times when family, or friend, intervention is much needed. I can speak from experience, as well as my own concerns for friends. I was in a car accident which left me with demensia for a time. Fortunately, due to family and dr. care, I was able to go through the steps of medication and recovery that I needed. However, to this day, I still have flashes of memory losses regained. Very strange to experience. I give thanks to all who are so helpful with those having this condition, or worse. it is emotionally difficult for those helping, as well as the injured. God bless you.
My husband and I live in a Continuing Care Retirement Community. There was an important nitch missing in the care available to couples in Independent Living Units. Those who have spouses with mild to intermediate Alzheimers have no help except paying $20.00 a hour for an agency worker. We want to keep our husbands/wives with us for as long as possible before placing them in the Alzheimer's wing. Three of us have formed a Support Group in which seventeen registered. We are starting a Pilot Club for the Memory Impared spouses to meet once a week so that the caregivers can have a day off. The Support Groups (we divided into two) meet twice a month and so far have proved to be very beneficial to all. The Pilot Club will start soon and required a lot of work with the administration. State and Federal liability laws are very prohibitive and limit what the retirement community can provide. Yes, caregiving is tough, and having friends to talk with about out mutual problems and experiences is important to me. Thank you for giving us this information chat outlet.
Re: relationships. My daughter was in total denial for 3-1/2 years. The change in my handwriting finally brought her to reality. My sons still think of their mom as "super mom." My husband was in denial for 2 years. He is my main caregiver and Home Health Care comes to our house once a week. Sadly, I was the first one to recognize my brain was not working properly. Forced to retire early.
Four different doctors and four different diagnoses along with several MRIs of the brain has changed the doctors opinions. My choice is to rely upon the Lord. He said, "I will be with you always," and I believe Him!
Marie and Tempest, The solution about the VA is that you need to write to the Director of the VA in your home state and have your doctor outline your loved ones' problem. At the rate the waiting list is growing, your loved ones will have expired before they get into a VA nursing facility. Have you thought about asking for Hospice in home care? If your loved ones are entitled to VA care, chances are that the VA will pay for it. I have also seen the financial matter handled by checking state laws to see if the other family members can be charged for your nursing services. Having the option to pay or take the responsibility for an ageing parent on a rotating basis may help them ante up to their responsibilities. When the lawyers comes round, they will be loving and doting children. But when illness strikes too often some children get the idea that "its not my problem" when it is everyone's problem. Marie, try it and you may be surprised at the response. Also, what does your state say about responsibility to the elderly by their children? You also might want to check the ELDERCARE laws in your state. Bunny
I am guessing that either their is no insurance or insurance wont pay??? My mom and I are in a similiar situation taking care of my dad, but I guess at least there is two of us. He has end stage alzheimers and is also bedridden. He has also lost all of his hearing so he just yells all of the time unless he can see us. We are trying to get him into the VA hospital because he is a WWII vetran, but the waiting list was huge. We were able to get a $500 voucher from the Vetrans association. Basically it pays for someone to come over once a week for 2 hours to give dad a bath. My mom has been hesitant to ask her church for help, but I suggested that instead of asking a specific person to help if she just wrote a letter to the church or put a posting on the bulletin board. Sometimes your church family seems to care more about helping than your "real" family. I have 4 brothers that refuse to help and like your family don't even call. Is is sad that their priorities are elsewhere.
My Twin sister was diagnosed with early onset of alzhiemer's. What is the chances of me having this as well. We are all concerned for her. And trying to support her.
I was reading your comments posted and it seems that no one is in the situation I am dealing with now. My mom has dementia, blind, bedridden and tube feeding. My oproblem is I work full time, married and caregiver for my mom. I've been taking care of her fully since her stroke 5 years ago. I get no help from anyone in my family, occasional visits and hardly any phone calls at all. I am so exhausted, mind and body, it is so stressful. I have not had a day off in 5 years, my morings start at 5:00 a.m. and sometimes I do not get to bed until midnight. She constantly calls me during the night at least 6 days out of the week. I thank God for my husband who supports me and helps when he can, other than that I have a huge problem with my siblings, they do not help out in any way, they say they do not like seeing her that way. To me that is a cop-out, I've had surgeries where I still had to take care of her even during my recuperation. I love my mom dearyly that is why I am taking care of her now, but sometimes I feel like everyone has decided I am obligated and they are not, and on top of all this I just lost a brother and it seems to be coming down on me strong and with a vengeance. Thank you for allowing me to vent, it seems whenever I do I get the comments God will bless you, He will renew your strength, and beleive me He is daily, nevertheless my mind, spirit and body is stressed and tired. Any comments or suggestions?
Support groups are good but sometimes caregivers need respite. I finally found help for me and my Dad through the Agency for Aging in our area. They are providing an attendant for 10 hrs a week for three months for Dad plus building a ramp at the front door. Dad is 86 with ALZ and is doing fairly good on Aricept. He was grouchy and angry for a while and it was hard but after seeing a councelor and reading Take my Dad..please, I have learned how to headoff major meltdowns for him and me. It is a longroad but worth it.
Go to a support group and see if you can get assistance with your Mom being diagnosed? Sun City, AZ probably has a ALZ support group, that could give you a lot of advise.
USF, in Tampa, is a major research hospital for ALZ. Check out the information that they have available.
You can take your Mom out for icecream and "drop" by to see the doctor. There is a quick test that determines the possibility of ALZ. Once, you get an MRI of the brain, you will have the truth.
It took over six years of my trying just to get my Mom to see a doctor. In the meantime, I went to meetings. I determined that she probably was a victim. Then, I had to get her to see a doctor.
Of course, she fought me. Tried to jump out of the car. Screamed at me. Hit me....been through it all!
Some days the visits are good and sometimes, to hectic to cope with. I never know what I am facing. I sometimes, just go to her room, when she is out eating. Then, I clean up. Wash dirty clothes, etc.
Other times, I visit with her being available. Sometimes, she will go out for icecream. My major problem now is that I do not have the funds to take care of all of her needs.
After a day with Mom yesterday, I come away totally drained. The fact that as Mom is out in the public, and displays her issues because of dementia, those around her have no clue as to what is going on. They have lived such sheltered lives.
They may "hear" of ALZ/dementia, but until they are literally in the throes of dealing with it, they are clueless. I get looks of sorrow. I get smiles. Sometmes, people are considerate. Other times, they just do not know how to handle the situation of a person with anger issues or short-term memory loss.
The public needs to be educated, now. As they face more and more people being affected sooner. You can feel so isolated in your world of dealing with someone else's pain. That you become too tired, to care about yourself.....all that you want to do is find a quiet room.
Does anyone know of Aricept causing headaches for over 2 weeks? My mom just started on this and I was wondering if the headaches are part of her body getting adjusted to the new drug.
My sister is gone, gone, gone, although she still knows me. The vibrant, super-intelligent person she was is no longer there. I think that the verbal abuse over so many years by her husband finally caused her breakdown; she withdrew into a private world of fairly gentle or innocent fantasies, and is now in assisted living several thousand miles from where I live. I'm not sure it's a particularly good place; she is always hungry, and all she does is sit and do nothing. Her walking is impaired also. I visited her three times, while she was still living at home, but now airfare has become much more costly and I'll need to stay in a motel rather than where she is. I pray that she will thrive in the present set-up, but whatever "assistance" she is getting seems minimal. Her husband, to whom she is still married, is the "decider," and blows up at suggestions. It is so sad.
The advtisements placed directly in the reading
space of your article deletes the authenticity of the content of your topic. It makes me think
that your are interested in promoting your pocketbooks more than giving life saving information to us, your supporters and readers.
I am a longtime patient of Mayo, and doubt that I see this in print. but your have my opinion, nevertheless. Jan Burrow, Austin, Texas
Something to be aware of. Statin drug side effects can include amnesia and muscle/joint pain that mimick alzheimer's and arthritis. For more info - Business Week, Jan 28, 08.
The comments from other caregivers are so true. Thank you for sharing them. My boss thinks that because he knows of someone with dementia that he knows everything about it. He could not be more mistaken. Once you've met one person with dementia, then you've met one person with dementia. It irks me that some people try to minimize mine and my loved one's suffering. It truly is the long goodbye.
All the advice is good if you CAN find a support group for yourself and your spouse. My spouse has ARDS. Since November 2006,I have been his sole caregiver. He had a serious relapse and crashed last August and was in a coma again for 14 days and then back to the Rehabilitation routine. I have asked repeatedly if there were brain damage and have been told "It is too soon to know." Well, his depression, tempermental outbursts, and inability to cope with being on large amounts of oxygen permanently have put a severe strain on our relationship. I first noticed that something was missing when he came out of the first coma in November 06. It is getting worse each day because he is limited in mobility due to high oxygen use. 3-4 litres while sitting and 10 litres standing or walking due to decreased pulse oxygen. Is there a support group for ARDS in the Rocky Mountain Region? I have tried the COPD meetings and they have nothing of substance for his disability. Thank you.
Everyone says it is impossible to get my mom help. I have tried everything in Arizona (except Mayo's). I don't know if it is dementia. She won't leave the house very much. She needs medication. No one will help her. My heart is breaking, and breaking, to break again. The only light and grace have come from a few brave Angels who were compassionate, concerned, authentic, and daring. Only to them do I owe so much thanks.
I have been trying to talk my mom into going to a support group. I really think she would benefit but she keeps making excuses. I need to have a intervention intervention.
Mayo Clinic is a not-for-profit organization. Proceeds from website advertising help support our mission. Mayo Clinic does not endorse non-Mayo products and services.
Check out these best-sellers and special offers on books and newsletters from Mayo Clinic.
A single copy of these materials may be reprinted for noncommercial personal use only. "Mayo," "Mayo Clinic," "MayoClinic.com," "EmbodyHealth," "Enhance your life," and the triple-shield Mayo Clinic logo are trademarks of Mayo Foundation for Medical Education and Research.
We comply with the HONcode standard for trustworthy health information: verify here.