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In several care partner support groups these past couple of weeks, the conversation has turned to the topic of relationships. More specifically, the changes that occur within roles and relationships when someone in the family has dementia.
I was asked if sibling relationships suffer when a parent has dementia. Often, siblings have varying opinions about how to deal with decisions they are faced with at the present time, as well as those down the road. Furthermore, each member of the family is experiencing grief and loss over the situation in their own way and in their own time.
Some members of the family may feel anger or resentment, some may cope by seeking out information and support, while others can remain in a place of avoidance or denial for some time. There can be family conflict and less cohesiveness. Yet, sometimes on this journey families come to a place where they say the disease has brought them closer than ever. I am wondering what your experiences are?
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My father has just been recently diagnosed with Dementia. He was living with my brother for the past 8 yrs and has let him deteriate before his time without me or my sister knowing. He is only 61 yrs old so my husband and I took him in unexpectedly. I am now his sole caretaker, taking him to Dr.'s appts and making sure he has a happy comfortable life. I asked my sister to help out every other weekend, which she has twice, but then started to say she was too busy. It just blows my mind how insensitive she is. This weekend I am allowing him to go visit my brother on a trial basis. My dad is hesitant to go, because I know he understands how he was not well taken care of. My dad misses his grandkids so I called my sis-n-law to make sure he gets his meds, takes a shower, and is not talked down to while he visits for 4 days. Am I doing the right choice, not sure but my husband and I need our time alone too. My dad does not have any money so finding an assisted living home is out of the question until he may qualify for some disability. All I have to say is that I have learned how to be very patient these last couple of months. :)
She has always been my rock and now I can't even have a phone conversation with her. I'm used to talking to her 2-3 times a day. She was my best friend, my confidant, my cheerleader in all things. I miss her sense of humor, the dinners after work and all our "philosophical" conversations. We would shop 'til we dropped and then go have a drink to unwind.
My family members want her to be in a better facility. But the one I found is one of the best in the state.
I did all the paperwork for her benefits, checking accounts, and to make sure she has a little money if she needs new pajamas or something. I am as organized as I can be for whatever happens next.
I miss her so !! How can someone like her become like this? She was always very independent, stubborn, always on the go, did volunteer work. She loved her grandchildren and children so much no words can describe that love.
I miss my Mommie! Is that silly to say? She's here, but not here. I wonder how God handles the people who are on the edge like my Mom?
Lately, I as I said earlier, I cry constantly, I am short-tempered with eveyone, and I hide out in my hobby room so I don't have to think aboutit all. I constantly apologize to everyone for every thing. Even things I'm not responsible for.
I don't know what to do! i hate that she is so vulnerable. I'm scared and I feel so alone!!
My mom has recently been diagnosed with vascular dementia. I cannot believe how quickly she has declined in so short a time.
In May of 2012 she was forgetful, but still living on her own. Then she had what the doctors called 'a stroke-like event.' Since then she has gone down-hill fast. She does not remember family members, she falls often, she either doesn't eat or needs someone feed her.
She is in a skilled nursing facility that takes people that no other facility will take. She was in a group home for a short time, but she became violent, tried to escape and even attacked the caregiver. There were many other inappropriate behaviors and the manager of the group home was relieved when I told him I was making arrangements for her to be moved to where she is now.
I live 3 hrs. away from where she's at so I call every day or so to see how she is doing. I feel like everything is on my shoulders and Im not doing anything right. I feel that I should be down there visiting her several times a week. I cannot do that, as I have husband and home and other responsibilities here where I live.
I feel that I am supposed to be strong for my other family members--but I could use some time to cry and grieve the loss of my mother without having to hurry through a psych appt
or feeling guilty for taking someone's time to express my self. I cry anytime I talk about my mom. She would hate how she is now and be so embarrassed and ashamednthat she is at this point. She has always been my Rock.
my husband has dementia,just diagnosed, forgets everything, We clean houses, ask him to put the laundry in, he does not turn the washer out..same house 6 years working there, I go to put clothes in dryer, they have not be washed, I got him a new chair, he did not want to spend the money..so he SHIT in the chair, he yells out in his sleep, kicks, and fights, I had to put him in another room, Some days are good, others are BAD. I a ANGRY all the time, I do not think I will deal well with this. He is NOT the man I married, He will go through spells of NOT SPEAKING, for the entire day. He walks up behind people in the store and says,,BAAaaaa BAAaaa your a LOST SHEEP of GODS (after bible study) he thinks he can still go deer hunting, he has not gone in 28 years, my son said I can just see you field dressing a dear now dad.He uses his elbows for weapons when he opens the door if I am on the lower step he will try to elbow me in the face instead of saying you are to close. SO I stay away from him, most days he just sits in the chair. When we go out, he gets lost in the store and tells the clerk things used to be over here or there and he is thinking we are in a store close to home. IF I let him out of sight in a store..I get angry when he gets lost and just want to forget shopping.He has a cell phone but he can't hear it in his jeans pocket, and he cannot remember to call me when he is lost. I AM SICK TO DEATH OF IT. Our children live 5 hrs away, they don't see it I want OUT!
Verda, can you get to sn Alzheimers Assoc. caregiver support group or meeting. At least you can call their 24 hr. hotline.
Six years ago my family insisted I stay with my mother in her Florida home until a day care giver could be found. I objected saying Mom should be in NY state where we all live but nobody backed me up. So I'm here again in Florida alone, my mother now in a nursing home in NY state. Six years ago Mom couldn't communicate well but now I remember the sunset walks and drives in the car which always cheered her. Understanding the disease can help to relate to our loved ones in ways not involving memory or conversation. They are lost but we can help them and can have good times even.
I have been the sole caregiver for my mom who was diagnosed with dementia in 2008. I knew prior to that diagnoses that mom was not mom! I spent the christmas season (2010) with a virtual stranger. She is still my mom is body and voice; however; she is not my mom anymore. We are now facing the year 2011 and I feel hopelessly lost. thank you for listening.
To RE: Beyond what the Alzheimer's patient must suffer, it is terrible what this disease does to the sufferer's family. In my post below I've outlined the personal costs and loss of family affection I've endured as a result of advocating for my mother. It's taken me 7 years to understand that they simply do not want to deal with it. My mother is easy to be with so I think it's just simple fear of this illness. My one brother and I are speaking a bit now, and my youngest sister, who suffers from mental illness has never had a problem being there for my mother. As for the rest of the siblings they need to keep it and me at arm's length. Once my mother got her diagnosis, sadly, I think she "disappeared" from their mental horizons. I am sorry this disease has also impacted your family to such a degree.
Since my mother died, and as an only son, we moved our family from TX to CA in 2000. My Dad (now 92) was diagnosed with Dementia by the VA back in 2002. We were not officially told of his medical condition until three months ago when forced. Then things began to fall into place of his different odd behaviors, auto accidents, and lack of fiscal responsibility. Had we been aware and advised earlier, this coaster ride would have been understandable. He is now with 24/7 assistance to maintain his health, safety, and welfare. Checking on him is easy since we live next door by design. We tried a top-rated Dementia/Alzheimer's facility in the area, but the patient to caregiver ratio was too high for adequate care and supervision. After 10 days, he was brought back home for another round of responsibility. This whole situation has ripped our family apart. Our youngest daughter avoided it all by an early marriage, the oldest one is at home, and still angry & seething, my wife has used a hands off approach, while I handle the details. Our lives consist of more than just care for him. We have been self-employed for 7 years. Everything combined has left us town-bound, frustrated, spent, angry, and upset waiting for God to bring things to a close. It is just a one way path that is being traveled by those with an expected end. There are no real answers why it happened, or magic pills or wand waving to help restore a loved one to who, and what they were earlier in life. It just is that
There's something in every single post that I can relate to. My mother is entering the late stages of Alzheimer's and my current family skirmish is about making Mom's final arrangements. It took 5 years for my many siblings to admit there was a problem, and then 3 years more to get her the 24 hour care she needed (she even had insurance for it). After the battle scars barely endured, I've decided I can't waste my limited energy in cajoling, explaining, arguing or begging them to understand the importance of planning for Mom's impending death. I asked my brother, Mom's executor, if we could calmly work this out in advance to honor our mother for a peaceful end and he simply brushed me off as my sisters did as well. I am trying to control my hurt and disappointment but will proceed with the paperwork with what we know my mother wants. With 20/20 hindsight I wouldn't change anything I've done for Mom. I would say that it's best just to be secure in your decisions and do what's needed for your parent. As many have said, despite the difficulties there are loving rewards. Dodge and ignore the bullets from siblings. It's easy to say now but try not to take it personally--a lesson learned after 12 years.
My mother has dementia for the past approx 6 years and has lived with my family for 20 years. Through the years she has helped me raise my family,we feel the onset was linked to death of my 15 year old son with duchenne muscular dystrophy. During these times the amount of stress is more than I'am able to handle. I have 2 sisters who provide no help with care giving and have not given my husband and I a break . The anger and resentment is so that i can"t speak to my sibilings,my husband was told by my sisters that because he made a promise to my father on his death bed that he would take care of our mother that it his duty. I feel so alone my sisters call sometimes once a month my now mother doesn't remeber them. My sister lives 25 miles away when I ask for help like taking for a weekend there is always a problem. I have 2 young pre teen kids and this is unfair to them. dementia and caring for my mother my has forever changed my family.
My father was diagnosed with FTD about 2 years ago. He was 56. My mother developed "poor me" syndrome and has not grown out of it yet. I have 4 siblings - 3 bro 1 sis. My sis is still living at home and is witness to some of the harsh words my mother says to my father. Since he was the provider for so long I honestly feel she has resentment and is mad that he got sick. I feel awful for my dad b/c he knows what is going on to an extent and feels stupid compared to what he once was. My mother's harsh words and actions do not help his situation. We have confronted my mother several times, and nothing has changed. My brothers choose to ignore the situation. I live 1500 miles away. My sister lives with them and puts up with it on a daily basis. She is 22, and feels trapped b/c she is trying to protect Dad from Mom. The girls and one brother (young ones) are at odds with the two oldest (boys) about how to handle the situation. I have contemplated having Dad move with me, but I think that would be a huge disruption to his life. The obvious answer is for my mother to stop being an abusive b**** and step up, but I think she is suffering a loss that she cannot see past. Our family is at odds, and this disease has destroyed more than my father's brilliant mind.
My 92-year old mom is exhibiting bizarre behavior - claiming that people are taking clippings of our shrubs, removing soil and gravel at night, accusing my husband of going into her apartment and switching out things like doorknobs, her toaster and such. But she is very functional in that she cooks, cleans, takes care of herself and drives to shopping. She is very headstrong and independent and I cannot even broach the subject of going to her doctor without incurring her anger. My husband ends up trying to convince her the these things are not happenend which results in them arguing often and loudly so that neighbors can hear. I am at my wits end to do something about the situation and am being bowled over by the stress of this. Any ideas about how to handle her?
My brother died.Doctor's said he died of dementia.He was failing. He looked older than his 83 yrs.yet he was at my house for a family function with my sister-in-law,with no nurse ,caring for himself in his home with his wife(who is 81 and also frail).
8 weeks later after progressively dieteriating he died I don't understand how he can die so quickly.From denentia?
My mother has dementia, she lives 1500 miles from me, I work full time and will be working full time for the next six to seven years not out of choice but necessity. My younger sister lives close to my mother, she has never worked outside the home her husband just retired, and feels I should come home to take care of Mom since I am the nurse, because she wants to spend time with her retired husband. My older sister is retired also and is able to spend time with my mother. They are so incredibly lucky to be able to spend time with both my parents. I do not like the guilt that is heaped on me daily. My husband and I visit my parents when we can afford to do so, and when our employers allow us the time to do so.
I wake up terrified and go to bed scared. I have my elderly mom to take care of, plus a full time job and NO help. She was on Exelon, only 3mgs a day, then the doctor said to up the dose. What a disaster. She is now more confused than ever. Found out she had a uterine track infection, and when she was on the Cipro she was the most lucid I've seen her in YEARS. Co-workers and friends are understanding but I'm still scared all the time. In home help is slow in coming and I don't trust them. I feel so bad, so full of despair!!!
Is Alzheimers the Daughters' Disease?
My situation is so similar to what I read here - my sisters and I are trying to help my mother (Diag 1/09), while my brothers are very much less engaged. Of course Mom resents us, has accused each of us of neglect, trying to steal her car, stealing her BP meds, you name it. She cancelled her life insurance because she was convinced the grandaughter named as the benficiary was trying to kill her. She packed up and left the state, only later to recant and say the girl "made a mistake" but Mom can't remember what it was...
Instead of frustrating yourselves over your brothers, SISTERS I call out to you now - Know this:
You can do something
You can do nothing
But you cannot compell or force someone else to do either. So love your brothers or whomever else "isn't helping" contact support agencies, and DO what you can.
Also I can surprised by the number of people who think that refusing outside help = being an awesome person.
If Mom had broken her hip would you fix it? Why do you think you can fix this? Please, allow yourselves to ask for and receive help in dealing with this disease. It's already tearing our family apart.
my uncle has dementia and suffers with heart problems,depression, mood swings. He is a Vietnam vet. he recently was released from the va hospital my me his power of attorney. big mistake!!!! 4 days later he became very angry, aggressive, and told my son & I
to get out of his house. he not suppose to drive his meds. consist of morphine, ativin, heart pills (2). he does has hospice's coming in twice a week. he is smoking 2 packs per day. I fear he may burn himself and the house down or hurt someone driving his truck.
My mother in law was recently diagnosed with AZ, and after numerous early morning calls due to panic attacks, she was evaluated by a genartologist and gerontologicalical psychiatatrict.
Our family placed her in an Assisted Living Center specializing in dementia care upon the advice of these professionals. Now, Mom is insisting on going home to be with her dog and being combative and abusive toward all of us when we try to either distract her or tell her that going home is not going to work. She's laying huge guilt trips on my sister in law, who's own health is not great, but who is considering taking her home with her just to lessen her own guilt. I know that Mom is in a safe, comfortable, good environment and that the best decision was made for her, but she's laid it on thick with the rest of the family and it's causing real damage.
Does anyone have any suggestions, particularly when she wants to have her dog with her? ( The dog has been given to a new home and is very happy and doing well)
Being the only family member in town with my mother who has early to moderate alzheimers is a difficult situation. My mother was diagnosed with memory loss at the age of 62. Denial among family members was the first obstacle. Now I find that I am being accused of not caring properly for my mother. This is not the case. It is so hard when I am here every day and knows what is going on and no one else understands that. Family members do not call me to see how my mother is doing, ever. They are not respecting my position. Now I am afraid that my mother is saying bad things about me to others. I know this is the disease but is still so hurtful especially when others believe this. I have been told by her sister, whom she only see's a few times a year, that I am a bad daughter. I am always here for my mother to help in any way. I would never show anger or disrespect to her in very trying circumstances. It is so unfair the way this disease is tearing my extended family apart. Luckily, I have a very supportive husband, who is my support and see's everything for how it is.
If you have a family member with Alzheimers, please respect the person who has the most contact with them. It is such a difficult situation and they need all the support they can get. Not questioning and critisim.
My father was diagnosed 4 years ago after my mother passed away. I'm the youngest of 3 caring for my father. My sister being the oldest my brother is the middle child. My sister lives out of state and my brother lives 7 miles from my father. I sold my home to move in with my dad with my family of 4. I work 55 hours a week and care for my father the rest of my waken day. My brother works 17 hours a week and never comes around unless he needs money from my dad. How can I get help from him so my family and I can have a break. I have taken care of everything, dodtor visits, financing,medicine & his home. I've taken care of his will with the help of my sister, she lives out of state but she calls all the time. I need my brothers help!!! I ask but he never follows through. Please help. All the support groups meet in the morning I work so I can't make them. I have no one to talk to. Please some one give me some advise. Thank you.
Judy- my mom was diagnosid with dementia 5yrs ago. I know now that she was having problems much earlier and none of us (5 siblings)knew it. We knew she was acting different but shrugged it off. Mom raised us by herself and still to this day is very independent,stubborn and can be abrasive. She refuses help, which doesn't help with her treatment. I have gotten arguments with family members who think and say I'm trying to take advantage' when I did all the work and pushing for help. My Mother didn't give me the power of attorney so I could make legal decisions even tho I was the one who was always around and checking on her. Dementia it self causes so much confusion with the person who has it that even if everyone gets along it' hard to find solutions. I have experienced having a problems not only with my family but also not having enough knowlege about nursing and rehabs and medicare/medicaid that by the time Mom is 100, I would finish understanding the total picture. Mom is 94. The one thing I know is that everyone in America needs to know how to prepare for their own disabilities and how it effects their safety, comfort, well-being and passing. Maybe then it won't hurt as much?
My dad was recently diagnosed with dementia. I've been trying desperately to get all of my siblings to help more with our elderly dad, even before the dementia diagnosis. I'm the only one who checks up on him regularly (once a day visits, whenever possible). Two out of my 4 siblings seem to be interested only in stirring up trouble within the family. They seem to resent me, partly because I'm the one who is the closest to our dad. My dad has named me in his legal documents to represent him in the event of his incapacity. He did this because he knows that I will protect him no matter how difficult things become. I stuck by my mother's side during many years with Alzheimer's Disease, until she died 1 1/2 years ago.
So, how do I help my family get past the resentments and hostility (which makes the care of our remaining parent even more difficult than if I was an only child)? I've tried everything I can think of (individual phone calls, individual emails, group emails, prayers, etc.) but it seems as though certain members of the family only want to play games and aren't making any genuine effort to get along and work together. Should I just give up on the 2 hostile siblings and simply concentrate on fulfilling my legal duties toward my dad (to protect him from those who might try to take advantage of him and to make sure he is reasonably safe & comfortable in his own home as long as possible)?
My mother died recently after 13 years as a victim of Alzheimers. Ten years ago, at the age of 58, my oldest brother was diagnosed with early-onset Alz. Just last week my other brother was diagnosed at age 63 with cognitive impairment and short-term memory loss. This disease is taking my whole family. I am devastated and in mourning over this latest news. It could come stalking me next. I am 62. I was my mother's caregiver for several years and finally wrote and had published a book: "Every Day a New Adventure: Caregivers Talk about Alzheimer's Disease." I interviewed 5 other caregivers and one person with the disease and told mine and mother's story as well. This is not a self-published book. It is an intimate look at what Alz does to families and the difficult job that caregiving is. As my daughter says, You laugh; you cry. But most of all, you believe! If you're interested, the book is available through PublishAmerica.com and Amazon.com. If it is of help to someone, I would be proud.
My mom has had AD for ten years. Her case was mild at first, a little more forgetful, got lost while driving a few times, often confused about little things, but she steadily progressed to moderate+ over the years. At first my father wanted to put her into assisted living right away. My brother and I fought him on that, we knew it would break her heart and we just couldn't do that to her. My father got power of attorney over my mom and resentfully said he would be the caregiver. Mostly he was (and still is)very angry about her being so needy. He truly believes that "she does this on purpose!" He resents the fact that we don't take a bigger part in her care, when we have our own families and jobs to attend to. We have encouraged him to get PT help in the house, but he won't part with the money. We go on weekends to take her to our kid's sporting events & for ice cream etc. Because I was not willing to take care of my mom 24/7 for two weeks when my father wanted to go on a trip, he no longer wants me around. I told him I will still continue to come by on the weekends to shampoo my mom's hair and make sure she has clean clothes on. I also do her laundry, change her bed, take her to the hair salon and pedicure place, make sure she has her toiletries and toilet paper, & check for her overall health and well-being. My father pays the bills & taxes, cooks one hot meal a day, & pays the cleaning lady to come every two weeks.I know my mom would be so sad if s
My mother died on Christmas Eve, 2000, after being diagnosed with Alzheimers 5 years earlier; it was, as the doctors put it, very agressive and fast. She went from a vibrant 75 year old woman to almost a zombie-like state within a matter of a few years; not to mention all the health problems that went with it, including a leg amputation due to a blood clot. My three sisters and brother helped my dad as much as possible - the folks lived 150 miles away from us - we developed a schedule of who would be up there with them each weekend and tried to stick with it...this gave my dad some much needed rest. We also had a woman come in daily to help my dad with my mother's bathing, etc. She was a God-send. My dad, too, has since passed away - October of 2003 - complications from pancreatic cancer. He was very alert to the end and we were all with him when he died. All I can say is the thing that helped us the most with my mother was a book - can't remember who wrote it, but the title is "The 36-Hour Day". Please read it -- we each had our own copy and it did help us. I can only say my heart is there for all of you in your heartache.
The complexity of demetia disease that my Dad has, and the ups and downs it poses for all involved is truly a complex challenge to say the least.I have lived next door to him for the past 6 years. I slowly have progressed to up to 50 hours a week for his care. My sister has too. the goal: keep him home. The financial stress, and the time that it has taken is affecting us beyond reasonable measure. I will say, we are just making it.
The blessing is knowing he has exceptional care. He thanks us in his lucid moments with such kindness, you know he is "still there.
The stress however has damaged my sister and I's relationship to a most probable point of dis-repair. The other siblings live too far away to be of any sustained support. I wish there were more alternatives for care in home, instead of Nursing homes... which are truly under staffed beyond imagination. We saw it first hand! We have given my Dad 24 hour care since Jan 17, 2008 and It has cost us: up to 150,000 dollars... My business has suffered. my health is in all aspects is showing it's wear, and all my relationships are stretched.
I would say the same for my Sister.
We both have our opinions, and I find that she, especially under this stess is not a team player. Old issues not resolved come up especially under fatigue and stress. so, my hope is to set my life up to not have set up a aging plan before I age too far, so not to place such extreme stress on my loved ones.
I'm the evil brother you all seem to hate. I live half way cross the country from where my father with Alzheimer's lives. I spend about $1,500 per month to visit him, which is fine because I can afford it. All my siblings live in the same town as my father. I just got back from my last visit. I had planned on staying at a hotel, but my siblings said I had to stay at his house. I got, maybe 2 hours of sleep per night because he kept waking me up looking for stupid things. The last straw was when he woke me up and threatened to kill me for stealing from him. He told me to get my blank ass out of his house. Of course, every time I visit I get nothing but obscenities hurled at me. I realized this time that when I graduated from high school, I went to college 3,000 miles away just to get as far away from him as possible. He never liked me and I've dealt with that through therapy, and am fine that he loves my brother and not me. But I'm DONE! I wrote him a letter telling him to remove me from his will because I won't be going to his funeral, and have called an attorney to se how hard it would be to change my name. What I've learned is that these lunatic's behavior is the same as when they were young, only magnified. Why should I bother with a man who never cared for me in the first place? In my den, I had a wall covered with generations of family photos. I took them down and sent them off to my sister and said I'm not part of this family anymore.
Judy, not getting impatient is about gaining a skill. And that skill comes with a true understanding and acceptance of the illness of the person. You have to really believe and understand that the person is not capable of the thinking processes we are expecting of them. And that is largely about being, and staying, educated. You will need reminders - that their lack of insight is more about an inability to have insight than a deliberate act. This behaviour stuff gets pretty tricky though ... but if you KNOW she has an underlying cognitive impairment (including dementia), you can safely remind yourself to love her through it (versus being impatient) because she is not capable of more. I take reassurance that the stuff that doesn't make sense, doesn't for a very good reason. And most importantly, know your boundaries - undoubtedly, it will get frustrating and in those times we all must walk away to rejuvinate. I'd also highly recommend a support group, if you can find one that you fit nicely with. The other VERY important thing to remember is the person's dignity. Our loved ones who are going through this are struggling with many losses, if not on a conscious level, they are on a subconscious level. Lastly, these situations do change with time, so if you don't have good solutions now, maybe they will come around the next corner ...
My 67 year old sister is in the early stages of dementia. I would appreciate any help or direction for resources that would help us to relate to her in a positive way. I find myself getting impatient with her when she keeps repeating stories (some I think she makes up). And I am sure she is aware as she was in the health care field during her working years (she was a physical therapist). She isn't always good about taking her meds which really help her when she does. She is so critical of some people sometimes. She is a single women with no children and I live 2.5 hours away. I have two sister who live close by, but they have jobs and so aren't there during the day. She is very secretive about her finances and plans. can we just ask her what she wants to do when she no longer can manage her life. Her house keeping is next to nothing. So I know there is some kind of inability to take care of those kinds of tasks. She has always been very strong willed and so its difficult for us to really get a handle on how to approach her and how to care for her effectively.
My mom has a dementia, but not from Alzheimers. She has Huntington's Disease, which I hadn't heard of prior to four years ago. There are five siblings and I have been the one to make the hard decisions. I stepped in to stop financial abuse by family members, self-neglect etc etc. I spent enormous hours applying for, and appealing a decision, about her pension - paranoia got in the way of her even applying when it was time. This situation is not drawing our family together - it limps along and is progressively getting worse. I work with caregivers and know how to support them, but when it comes to my siblings, it just isn't so easy. I stay involved with a support group and encourage others that this may be a source of support. It doesn't, however, solve some of the problems on this difficult path the family is on. I have been blessed to be able to work with seniors with dementia, and their caregivers, which has given me great insight into my mother's condition. The siblings, on the other hand, are very slow in understanding these cognitive changes. There are busy lives, past relationship issues, their own fears, etc etc. that get in the way. In the meantime, the things that I do for my mom are made more difficult by their inability to be a mutual support for her (and me, as I do so much of the caregiving duties). Nonetheless, I am determined to look for ways to make the sibling relationships better and keep our family supportive of one another.
Denise asks about dementia and Alzheimers being one and the same thing. I am a social worker working in health are with seniors with complex medication conditions, many of whom have dementia. There are different causes of dementia. Alzheimers is one of them. So, yes, it is one and the same thing. You might also have a dementia from a stroke, or Parkinsons, etc etc.
My mother has early-on set Alzheimers. In 1995, she moved from PA to AZ to live near me. Unknown to me for about 3 years, she spread lies that I stole $60,000 from her. Partially due to her delusions about me, she returned to PA in 1999 for 3 months (without letting my siblings know she was coming). While in PA, she finally received the diagnosis of Alzheimers.
My siblings wanted to place her in a SNF, which I adamantly opposed. Her disease had not progressed to the point where she needed that level of care. She had pets, which had become the center of her life and putting them to death would have been a form of elder abuse.
There were vicious exchanges of e-mails and phone calls over mother’s living arrangement. However, I finally prevailed and mother returned to live with me after staying in PA for only 3 months. She lived in our guesthouse for 3 years, before I finally had to place her in an ALF 6 years ago.
My siblings hate me and have no contact with me or my mother. If it wasn’t for my messages to them about mother’s condition, they wouldn’t even know if she was dead or alive.
My pain and loss involves watching my mother die for over a decade, and losing a brother and sister. The disease resulted in the total disintegration of the family.
Something to be aware of. One side effect of statin drugs can be amnesia (global transitory amnesia) that resembles alzheimers. Another side effect is muscle/joint pain that resembles arthritis. Check Business Week Jan 28, 08 article on statins for further info.
The implicationon this site are that dementia and alzheimer's are one and the same. I thought they were different illnesses. Please explain.
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.
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.
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.
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.
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.
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.
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.
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!
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?
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.
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.
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.
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?
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.
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?
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.
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.
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?
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.
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.
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.
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.
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