5 Biggest Issues That Sabotage Family Caregivers

My mother has lived with me for 7 years. The last two years she has been total care. The only thing she can do is lift a fork to her mouth. She doesn’t complain about anything. She gets mixed up but is pleasant. She eats 3 meals a day and wants big meals while being extremely picky. My mother has not paid anything to live with me. The last two years I have used her SS check to help pay for a sitter while I work 50 hours a week. Every waking second that I’m not working I am taking care of her. She is totally incontinent and wheelchair bound. I am her only caregiver 7 days a week for two years. No help from family. At first I expected some but realized there was none coming. I am burnt out. I have no escape and realize this is my life. She is 91 and I’m 63: I am so tired. No one is coming to help and she will probably outlive me. I do my prison time everyday knowing there is no parole for me. I am an RN and know what I can do to get assistance. My mom is selfish and refuses a nursing home. She considers it my duty to take care of her. I just needed to talk to someone who understands. Thank you

Being a caregiver is a demanding job. You provide comfort and care to patients who are experiencing so many strong symptoms: the denial, anger, lashing out,depression, talkative, outbursts... As much as I try to remain stable, riding the rollercoaster of emotions with the patients leaves me drained. He has one family member who is actively in his life, the others do not have contact. It helps to read blogs on caring.com and other sites to know that I am not alone and there is no one solution to repair all that is going on with Alzheimer's dementia patients.

Well I give on my long response it keeps disappearing but thank you mandibular I will call his social worker in the morning Goodluck to you

I just wish I had the inspirational wisdom of all these caregivers when I was caring for my mother. She lived w/me from 2001 through 2005 (I had to take her w/me when we evacuated during Katrina.) She developed dementia and became verbally abusive during the time she lived w/me, By 2005, her physical health required her placement in a nursing home where she lived until her death in 2011. I visited every week & sometimes in between weeks. All the nursing home staff knew me by name and my cell phone number too. I took my mom out often in her wheelchair for meals (which she loved) and family events. I'm not sorry for any of the choices I made during that time, but I missed a lot of time w/my grandchildren because I was tending to my mom. Now even after these three years w/o her, I still think I could have done more ! ! !

Brotherly Love 4ever, wish I could tell you it gets easier, but it's more like a rollercoaster ride. Find a good social worker who can help you find the best options for your brother and yourself. I had to put my husband in a nursing home and, despite the fact that he complains about it constantly, it's been the best thing for both of us. He can diffuse his frustration over an entire staff instead of directing it all at me and I have some semblance of a life, though I still can't do a thing without taking his needs into consideration. I felt guilty initially for putting him in the nursing home and financially it's been devastating, but I realize in hindsight that it was the right thing to do.

Hi I am new to all this and completely overwhelmed I got a call in December from my sister in law telling me that my older brother (he is 54 and I'm 52) was on life support and couldn't walk or talk she said he had a heart attack and the hospital put him into immediate detox he is an alcoholic I live in Indiana they live in Arizona she bought me a ticket to fly out to help it being 2 weeks before Christmas I didn't or couldn't afford the trip out my husband and I discussed it and both agreed I needed to be there anyway to make a long story short he developed hospital acquired pneumonia and with his COPD and CHF thus almost killed him he was intubated 4 times his heart failed once and they did CPR for more than 5 minutes he has some brain damage and alcohol dementia he was in a skilled nursing facility for 3 months and has only been home for a little over a week my husband text me one day and told me not to bother coming home and said that he put all my belongings in storage and it was paid for 6 months I was totally blown away never seen it coming so now I have become my brothers caretaker and he has a lot of the things mentioned in the article his short term memory is horrible and he can barely walk which has caused a few toileting issues he doesn't want to listen to me at all and he's real demanding and hateful to too all this off his wife has decided she doesn't want to be with him anymore and has asked us to move he refuses of course and needless to say I am very uncomfortable with these things but I don't want him to go back to the nursing facility I am completely overwhelmed already and he's only been home 10 days any advice would be appreciated I am going to try some of the suggestion in the article

Boisegem , you sound just like me. My family promised the moon n the sun. I canot depend on them. They haven't been there even when asked. Their life n what they want to do is more important to them. Its been two years for me caring for my df with dementia n Parkinson. My only help is my spouse when able because diabetes n neurathaphy in hands n feet so hes got bad days too. Coming to this site has been great. I have learned lots n everyone here knows what its like. There are no nearby support groups where we live. If it was I would go regularly.

Absolutely nothing. I am grateful for any information posted and this article was a great source of things to think about as I am about to take the role of being my mother's caretaker. Thank you.

I have been taking care of my sister for about I year now.it makes me cry and hurt for her.she has c.o.p.d ,blood disorder ,schizophrenic, and a lot of other things.I get know help from my family all they want to do is put her away.I am the baby out of 9 girls and my sister I take care of is the one before me I can't and want put her away she my best friend and I don't want her by her self I can do it all I just need to know how I can get paid but if I can't that's OK too because I love her and she will not be alone as long as I am alive God will find away for us to make it

Here's another reason for caregiver sabotage: The person you're caring for is never satisfied with whatever you do yet wants more and more attention. Everything is: "It's nice ...but" "It's good ...but." Followed by, "Can you do this?" "Can you get me that?" Try raising 4 children while caring for 2 mothers all under 1 roof. One of whom always oversteps when it comes to parenting our children. We have asked for her to step back and let us do things our way on numerous occasions. We have argued. Either way we get a guilt trip. "I can't say anything." "Maybe I should move out on my own, even if it's a dog house." Her actions have made the children distance themselves from her. For a time no gratitude was shown for my efforts to care for her. Now that she does acknowledge and say "Thank You", I'm to the point where I feel it's too little, too late. It sounds forced to still get what she wants. I'm done.

I am an only child. My mother lives with my family. She has Parkinson's dementia. She is very uncooperative, prone to anxiety and panic attacks. Feels she is dying all the time. Thinks I'm really mean cause I want her to stay up in the daytime. I'm very tired, depressed. Etc. My husband is not understanding and I can see that he resents her. This makes me resent him. I wish I had help. But I don't.

Boisegem, I understand completely when you say you “didn’t have the luxury of time.” My caregiving role is over; the last year became almost unbearable. (The fact that I was a daughter-in-law was significant.) It was then that I wrote a book: "What to Do about Mama?" My intention was to share information so that other caregivers might have more foresight based on the hindsight of the 35 caregivers that contributed to the writing of the book. My book has nothing to do with “having all the right answers” or “10 easy steps that make caregiving easy.” No one has all the “right answers” (even the experts) and caregiving is never easy. What I have written is not glossy, but it is honest. The problem seems to be that people who are not in caregiving situations often feel “I don’t need this yet;” current caregivers are “too busy;” and past caregivers want to “put it all behind them.” Your epiphany that you were alone in your caregiving is common. Forty percent of caregivers report problems with their siblings. But then, sixty percent must have found some level of cooperation. In my own circumstance, we had family meetings—twice—but we still proceeded based on the assumption that everyone was onboard and working from the same page. And we did receive at least some support from my husband’s siblings. What we found out, however, was that the support (of some of them) would not go beyond what was convenient enough that it would not interfere with their lives too much. It took a family mediation for begrudging change to occur, and relationships have probably suffered—permanently. Looking ahead and being prepared might or might not help. (You are correct that we cannot be in control of all the people and unforeseen situations that will develop.) Developing a care plan with a contract of commitment for all involved parties to sign-off on could well-be an exercise in futility (and yes, it should have the flexibility to evolve for those unpredictable ever-changing scenarios you mention). Nevertheless, it is something I would at least try. With the alternative being to shoulder the responsibility alone, I don’t think there is much to lose. I am glad to hear you have learned the importance of self-care (for which I was labeled as “selfish”). I am also glad you developed the ability to just “let it go.” Not an easy task, but worthwhile, indeed. In addition to my book I have a blog of the same name that can be found at: http://bgmatthewsblog.wordpress.com Your comments on my blog site are welcomed. Barbara Matthews, author What to Do about Mama?

I love your statement cgbook, "I became resentful when the "others" did not meet our expected level of involvement." So did I . . . in the beginning I was absolutely horrified when the reality of the situation truly became very clear and I had the epiphany that I was very much alone (except for my husband) in caring for our Mother. I am the oldest of three and I am the only daughter. As my husband says "we stepped up and they stepped out." No truer words have been spoken, but we had a narrow window of time to make critical decisions and we all three live in different states including my Mother at the time. We truly didn't have the luxury of time to assess and to have any foresight into the perspective future, so decisions were made, and promises were made by extended family to help in various ways if indeed we relocated Mother to our state for her care. I call these broken promises and the impact was traumatic for me as my life was the one that was impacted, the commitment of time that is required was and still is relentless. The other aspect was our Mother had a stroke and it wasn't until a year after her stroke was she indeed diagnosed with dementia, progressive dementia, as I know of no other kind, but it was no longer a matter of wait and see what deficits were permanent from her stroke it was a new paradigm. The ever changing scenario that can never be predicted in the beginning. In our family there is not shared responsibility and or a mutual understanding from the onset, we had no choice but to proceed on assumptions as we did not have a clear foresight into the exact diagnosis in the beginning. This does not dismiss the reality that many family members go through and is fairly common in our society, one sibling will step up and the others are more than willing to allow for this one person to assume all responsibility and they are okay with that situation. I truly believe that many and I am no different than many others that have lived this . . . we are full of good intention and we find out later that the road to hell is paved with good intentions, as we do not have a crystal ball to see into the future and that is probably a blessing in disguise. We do not have the ability to know that our family members, our extended family members, etc. that are all there in the beginning, will in fact, perhaps not in words, but their actions will convey that their lives become far more important than yours, for a variety of reasons, but primarily it is because the "problem" has been addressed, not by them, but by you! They are more than okay with this situation and that is the part of our so called expectations that really hurt the primary caregiver and I would also so say that my so called expectations of someone doing the right thing, such as keeping their word, being mindful of the commitment that caregiving is and the impact that it has on the primary caregiver's life is something that few really carry with them in life, and why would they? That would be the prescription for them to actually be accountable for their actions and behaviors and I have had a front row seat to the fact that few if ever really want to admit that they are selfish, self serving individuals that really do not have a problem with watching from the side lines regardless of how your life is impacted, as long as theirs is not. Pure heartbreak on every level for the caregiver that simply is trying to care for a family member. This is the reality of the family caregiver. In the beginning I had relocated Mother to an assisted living facility in our state but I was still required to oversee all of her health care, her relocation, finding the best medical care for her in our city and state, it goes on and on, very time consuming and in fact eventually we made the decision to move her into our home and that was after 18 months of paying for assisted living and all that goes along with being in a living facility, the ever revolving door of care providers, patients, policy, etc... If one thinks that a care facility deals with all aspects of care, one would be very naïve, to assume such a fallacy, it doesn't work that way, of course it depends on the care contract that you have in place, but believe me, for every single list item beside room and board, utilities, food, and or the level of care involved, there is still many other responsibilities that are required from family or the family point person. This is reality, time moves forward and others move forward with their lives and the patient and the primary caregiver are living within the level of the disease and the level of care that is required at the time. I was fortunate in the fact that as soon as we made the decision to move Mother into our home I had found a geriatric psychiatrist that we started to see on a weekly basis and I say that I was fortunate because many do not have this option, but it was truly the key to my well being and my mental health well being in truly being able to navigate through all the feelings and emotions that go along with caregiving, feelings of abandonment, and the very real fatigue that comes with this level of commitment. One of the most important aspects that I learned through two and half years of therapy, and that I would like to share is the following: Learn to ask for what you need from family and friends and then prepare yourself for not having your needs met! It sounds harsh, but no truer words have been spoken, at least in my experience. It is the first of many steps in dealing with ones expectations of others and the reality is for me as I can only speak for myself, and that would be the less expectations that you have of others the better off you are . . . one can never predict the behaviors of others, even when you have been raised together, your idea of family, and or your perceived views on what you believe that others will do, if they will be present or absent from the caring process. The reality is that once you accept the truth as it truly is that is when you can let go of any or all expectations of others, the only expectations that I have are of myself. If something good comes our way, well it is safe to say that sheer gratitude is my way, but I no longer have any expectations of anyone. I am happier for that and I no longer engage in feelings of outrage and or denial that our extended family and friends will be anything different than what they are at any given moment in time. I've learned that others can be accountable for their own behaviors and they can simply own their contribution or their lack of contribution in the caring process. I believe in "personal responsibility" and that is to say that when one assumes that there will be "shared responsibility" you truly do set yourself up for heartbreak and disappointment, it's truly not worth the added stress and all the other issues that come along with it . . . I've learned that my energy is precious and that time is transient and that I have come to know that if I do not value my contribution and simply carry on with my life and the responsibilities of my commitment to care for Mother and to have any expectations otherwise is fool hardy at best . . . you see the true character of others in situations like this . . . and it's not always pretty. However, time well spent on self care is far more productive than sitting around wishing that your family and friends would or will rise to the level of care that is required in the long term, because rarely does this ever happen. Let it go is what I've learned and be very selective as to where you are willing to assign your energy to . . . save it for the important things like making sure that your cared for, that is truly the only way.

Good comment, Boisegem. In my own experience, I became resentful when the "others" did not meet our expected level of involvement. I was unable to accept their standards because I was a daughter-in-law who quit a job to be a fulltime caregiver. "Shared responsibility" is an important topic for discussion and mutual understanding from the ONSET of the arrangement. Don't proceed on assumptions.

This is a great article. I related to every single warning and or sore points, or obstacles to caregiving. Personally I have dealt with each and every point as I have been hands on caring for my Mother with dementia for seven full years in my home. Speaking only for myself the loss of privacy or better put, my lack of personal time as been extremely difficult for me. As I truly believe that I am in need of my private time that allows me time to work on my creative nature and my private pursuits of learning and educating and producing creative art works in writing and editing and other art forms. Of course we are all different in our individual needs. In relation to the "lone soldier syndrome" I personally laughed out loud . . . as no one starts out on this journey wanting to be a lone soldier in the caring process. The reality is that one becomes a "lone soldier" because of others including family and friends go on with their lives, you and your charge are essentially left behind . . . your world is caring for your loved one that can no longer care for themselves. Resources are very difficult to come by and if you do not have the financial resources to pay for extra help; you pretty much end up doing it all by yourself. It's not healthy by any stretch of the imagination, but reality is what is . . . and this is what happens to many of us. It's not always a choice, it becomes critical, as you cannot just simply walk away from these types of responsibilities. It is far easier to fall into the caring process than it is to simply extract yourself from the situation. This is something that many are not able to discuss even in support groups because everyone has different resources and some have next to none, each situation is unique, just as each persons dementia is unique within itself, highly individualized. Yes there are levels of decline that can be referenced but they are not always individualized because it's really next to impossible to do with cognitive decline. All the more difficult to obtain help with these types of diseases and made even more difficult by Medicare to keep individuals on Hospice when living with these types of diseases. My point would be that although we know the warnings, we are not always able to have the community, or financial resources, that will indeed allow for an array of choices in managing caregiving effectively. This is something that is critical in caregiving and is completely lacking when it comes to the family caregiver. If one tries to keep their loved one at home as long as possible it would be nice if there were resources offered to the family caregiver to make this achievable within your personal ability to deal with the disease. It is stated that 'Diseases are realities, not wishes.' well I agree, and more important, reality is the fact that caring for a loved one is compounded and made more difficult by lack of resources made available to the family caregiver. Caregiving is an act of love and sacrifice . . . it should be honored in our society, but instead, it's made more difficult. That's reality!

To sum up caregiving as briefly as possible, I would say: Caregivers get involved with caregiving to meet a need, solve a problem, or deal w/ a crisis. Although the situation often improves—for a while—caregivers often do not take the following into account: 1) the process of aging cannot be controlled; 2) needs will increase—sometimes over many years; or 3) how heavy the burden can become. Therefore it is important to have realistic expectations about caregiving; to remember that we’re all moving in one direction through life; to be prepared for the unexpected; to communicate expectations clearly to the “others;” and to develop a caregiving contract of shared responsibility to be signed-off on by all involved. Barbara Matthews, author of “What to Do about Mama?”, http://bgmatthewsblog.wordpress.com

Lack of Privacy Section: If the lack of privacy suggestions worked--the person wouldn't have Alzheimer's.

How do you handle the situation when you are the one in need of care and it is your home. We offered our home to my daughter and 5 grandchildren to live with us after divorce. Now I am not in the best of health, but if I try to get kids (all girls, 3yrs to 15yrs) to help with any kind of household chores, my daughter gets upset. She tries to do it all and I know it is hard on her. She cannot afford to get a place of their own. I do appreciate all she does but the kids are destroying the house!

Accept the ultimate outcome, that despite your best efforts, best intentions, and the patient's most adamant fear of one day having to be placed into an institution for their final year(s), it will inevitably become necessary. This disease is irreversible, does not "improve with age" and there is no cure. Sooner or later, for your health and their safety, you have to let go.

I had to go though this with both parents but I realized early on that my privacy, personal "me" time and outlets were too important. I had to do something fast. I knew that both of them did not want to go to the home but I was in my 20's and I had a life to live. I did not want to though my life away. I had a frank talk with them and told them I did not want to though my life away talk care of them. I knew that no one else would help me and I realized that I had more important things to do like go to school and have a fulfilling career. I ended up sending them to the home. I know it sounds selfish but I wanted best for everyone in the situation I was in.

I started out as a caretaker for my great aunts when I was 14. I took care of my husband's grandmother, my father and then my mother. When my mother was diagnosed with Alzheimer's , she insisted that I not become a full time caretaker. She knew I couldn't afford to quit my job. I have 4 brothers and sisters who didn't know about her diagnosis for a couple of years (my mother's choice) We lived in a two family so it was easy for me to check up on her. What we did was sit down and make a list of 'things' that would predicate her move to a nursing home. Included on the list was wandering, safety issues, incontinence and lastly, when she didn't remember me. My siblings were upset when we first started talking about a nursing home. (very important to select one that specializes in Alzheimers). They soon found out that she didn't even know who they were anymore. One of them took her for a week and after 3 days called with an apology saying she didn't know how I had taken care of her for 3 years. She did go downhill very fast but I think the most important thing was to make that list. It made the transition to the nursing home easier because we decided in advance when the time would be right. I think everyone needs to make this decision while the person with Alzheimers still has the facilities to help make that decision.

This is a very fine article; I will be pondering the ideas as I go through my day. I just wish I could get it in single-page format so I could easily print it out and carry it with me.

Good list but I'd like to add one little (not so little) caveat. Make sure that the Non Care Giving family members, i.e., care giver's siblings, are on board with all aspects of the situation. This is particularly critical regarding finances and more so if the care giver has permission to delve into the Loved One's finances. The family members who are NOT giving care often don't seem to grasp the pressures that the care giver are facing and can be insensitive at times----causing unnecessary problems, again, regarding finances. Keep careful records and lists of expenditures or, better yet, find an outsider who is willing to assist in this. It is so much better to have everything spelt out in black and white than to try to explain things later when one can't recall every , little detail.

This article identified several major problems associated with being a full-time caregiver, as well as offering realistic advice & suggestions for dealing with these issues. Well-done, I found it very helpful.

My wife and I (mostly her) have been caregivers for her mom for the past 7 years. She is 90% bedridden and my wife stays home full time to care for her. We promised her dad on his deathbed to care for her as long as we were able. She is fine mentally speaking but is very high maintenance (kidney dialysis 3x a week); diabetic...lost he leg; pacemaker, among other maladies.) We get ZERO financial help from wife's out of state siblings (stopped asking several years ago...they are pushing 60 and if you have to badger them at this age...forget it!). I have a job making $25 ,000 a year and wife and her mom have a little pension each month. We chose to do this and would do it all over again. It has been tough in various ways but we feel it's the right thing to do to honor her parent. The one thing I remind my wife is that she will be able to sleep at night later in her life knowing she did all she could to honor her mom and have no regrets...We haven't had a vacation in 8 years and can't even get away for a single night alone as a couple but we cope and make the best of things. We know the day is coming soon in placing her into nursing home but probably for our own health and home reasons rather than hers. Caretaker burnout is real but we have been way past that stage..:>) for some time. Protecting the caregiver has to be considered as the elderly are living longer and longer. If you have a sibling taking care of your parent...PLEASE don't assume everything is "taken care of"...you don't have a CLUE until you walk in their shoes...do what you can to help alleviate financially, and care-wise rather than being on the golf course and constantly entertained and assuming all is well and please don't micromanage from afar...

I would recommend "The 36 Hour Day" a very comprehensive book on caregiving, it has great information, five and half years ago, one of my Mother's Doctors gave me a copy. It is been very helpful. You can find this book at any bookstore, and or Amazon.com ~ also it's important to educate yourself about the disease, because each dementia is unique with itself, yes, there specific guidelines that will outline the progressive nature of the disease, but not all patients display the same deficits, it's important to remember that caregiving is very difficult, it is relentless on the family caregiver, 24/7 if the patient lives with you, as my Mother has been living with my husband and myself for over five years. Even if the patient is not living with you and is living in an assisted living it is still very time consuming for the primary care appointed family member to oversee and manage the care that the patient is receiving. I personally was running myself ragged running back and forth from the assisted living that my Mother went to after having an very serious stroke, this was prior to her diagnosis of Alzheimer's Dementia, she was in the care facility for over one year, and after four documented falls and several medication errors, and a ridiculous turnover in caregivers, we removed Mother and brought her home to live with us. This was not an easy decision to make, but at the time she was in the beginning stages, I was so exhausted from running back and forth that it was actually easier for me to provide the care she needs in my home. I would not recommend this to everyone, because it is very time consuming and one must have a solid foundation, i.e. solid marriage and the ability to witness the most horrific disease and know that it is progressive and that it is a terminal disease. It is also important to look at the bigger picture and know to keep your options open to additional help and or re-placement in a extended care facility. The most important advice I would give anyone in this situation is that it is critical to care for yourself, do not depend on family members to help you, they will go on with their lives, and you must take care of your health, physically, emotionally, and spiritually, that is the only way that one can continue to care for a loved one.

Being more helpful on suggestions for the elder who is being cared for. For example, if the elder can do something to aid in their in-home care, listing those ideas.

One other comment - there is a very fine balance. If the parent is NOT mentally incompetent, you don't want to put yourself in the position of becoming their "parent", either. Their dignity and their right to make decisions for themselves must also be respected, although it is your house. When both parties become resentful, or the relationship begins to break down - it's time to find another resource, even if that means assisted living or even a nursing home. Check with your Department of Social Services. You may resources that you don't even know about in your community or state. Sometimes there are free "adult day care" or senior groups. Get mom/dad out of the house and into some activities that interest them. Often volunteers will pick them up. You can become a verbal abuser without knowing it - and certainly not intending it. It is SO easy to do. Caregiving, as we know, is like parenting - it's nonstop, for years on end. Parents have somewhat of an advantage because the kids grow and develop and can assist the family to some extend. An aging parent or patient cannot. Find a support group for yourself in any case. If you can't get out, go online. I wish the internet had been around. I was a child caregiver. Doesn't matter how much you love the parent.....the stress, seeing things nobody wants to see a loved one suffer, no respite - it damages the soul and mind in ways outsiders can't possibly understand. Good luck. God bless.

Please, FOR THE LOVE OF GOD, stomp on anyone who waggles their fingers at your children and admonishes them to "' be good' for mom and dad, now." An unbelievable number of well-intentioned but clueless-clod friends and relatives seem to think it's necessary to do this to children of seriously ill, disabled or terminally ill parents or caregiver parents. First - it's unlikely that the kids are "bad" kids. Second - younger ones may believe that the grandparent/parent/aunt/whatever is ill/changed/disabled because of something that they did. Third - older kids often shut down, thinking it's bad or selfish to talk about their own feelings. They should be allowed to express their emotions - includng anger. How do I know? Been there. It took us years to get over this, and if you ask a support group of such children, you'll find it happens ALL the time. If someone does this, shut them down, preferably in the child's presence. "Susie IS a good child. She's such a help and support to us in this. Please don't suggest such a thing" Later, take the adult aside and let them know why such remarks are inappropriate, and that you would appreciate this not being done again. PLEASE. It's especially bad if the children are also caregivers.

We needed a court order to get guardianship papers for our parents. I filed for the orders and a copy of the request went to siblings. Both parents agreed. We were in court as a formality. Our older sister (manic-depressive) told the lawyer and judge that she is no longer receiving $340.00 weekly from our parents to pay her mortgage and she needs "her" money. Mom is 78 and Dad 85. I brought Mom home from NH yesterday pending financial transfer funds to enter her in assisted living. She is a handful plus. My brother said to just let the judge handle sister. She told the judge that she has been receiving these funds for five years and she has to have "her" money. Total received if accurate over $88,000. The judge will get her the help she needs. Send hugs, candles and written kisses.

Thanks everyone for your comments! For those mentioning a need for offline senior care resources, such as in-home care providers, please get in touch with Caring.com via our toll-free Caring Advisor referral line: 1-866-824-8174. Caring.com can also put you in touch with your local Area Agency on Aging or a geriatric care manager, for assessment of needs and referral to free or low-cost services in the community. Additionally, this article, "How to Get Your Loved One to Accept an Elder Companion" may also be helpful: http://www.caring.com/articles/how-to-get-your-loved-one-to-accept-an-elder-companion

My 79 year old mother has liver disease and her dementia is very much on the path and similar to Alzheimer's although not exactly the same. She does sometimes have moments of clarity although they are quickly gone again. Before she was diagnosed she remarried and THIS has become our nightmare. Whenever we try to do something for her, her husband stops us by pouting and making her life hell until she gives in and lets him do what HE wants. (From driving her places or helping her drive HIM places, helping with the house, encouraging her to move to an elder care apartment, etc. etc.) He is also showing signs of dementia and between the two of them, things are going horribly wrong in that household. His family pretty much ignores him (unless they want money) and now no one in our family wants to deal with him either, he's so miserable -- and yet my sick, frail mother is trying to take care of HIM and appease his dementia/health problems at the expense of her own health. Meanwhile, he just cares about himself and doesn't help her. It is a nightmare without end. We cannot find or qualify for help anywhere -- and he won't allow the kinds of in-home care they can qualify for. The most common words any of us say anymore are, "I don't know. I don't know." We feel hopeless AND helpless. It's like knowing a huge trainwreck is happening and not being able to stop it.

My wife has Pick's dementia...some different from alzheimer's. none of the dementia's are fun in any sense of the word..I be1lieve that my precious lady has had this since 2001m altho, i did not know until 2008....I just knew something was going wrong...I have been disabled for well over 30 years....we have been married 45 years...Boy what a wake up...it was chipping away all of her personalty, and she started flirting...that was hard at first, but, it is not her it is Pick's dementia..and I never know what she is going to say to anyone....like ..why are you so fat? or your pruty to the men...or to the MEN...are you pregnant? many other things...I don't have all the answers, because this is a never ending, changing, day by day, hour by hour, 24/7 every 5 minutes thing...but I do know this....the placing of my hand on her face make her very lovey,putting my heas against her1, make her happy....ignoring the things she does and going on without scplding her....because in a few minutes it is forgotten.....the hardest thing is no communication, We used to laugh and have fun....that is gone..making love is one sided. kisses are a peck, but I make her give me a good kiss...dementia is horrible, it is hard...it is draining....but , it is worth it....as long as she is by my side...I don't care what she does, because I know deep inside she loves me, and I love her....and yes, I have to get away for a few hours, and yes I feel guilty, but I know it is dementia....and it is going to take her away from me...but I will enjoy every moment I can make her smile, laugh, grin. Yes folks in my opinion it is worse than cancer, because there is no cure...but love them while you can...and don't let anyone interfere wrongly. Be strong, protective to the point of going to jail...(if you go, you won;t be there long.... that what adult protection services are for....you as well as your loved one...and even the police, if you handle things in a proper manner, will be on you side....and just be there....you are needed and appreciated. Not everyone understands, but the ones that count....will.

It is very stressful and this article will be forwarded onto my siblings who don't seem to understand nor help out enough if at all. Not only am I taking care of my mom for the most part, I sold my home, moved to her town where we live in a rental home, and get treated like the maid without kindness. I NEED a vacation. It makes me resentful when I hear about all of the fun trips everyone else is taking and fun things they get to do when I don't get to do anything except care for my mom. It's as though I put my life on hold.

Practical and useful suggestions. Nothing fancy. Things we can actually do.

more than anything....doing pretty mush what can be done....this just reinforces it

THIS DOES NOT JUST PERTAIN TO OLDER PEOPLE!!! WE'VE HAD MY YOUNGER BROTHER LIVING WITH US SINCE HE WAS IN A SERIOUS CAR ACCIDENT, HE SPENT 5 WEEKS IN ICU TRAUMA UNIT THEN ABOUT A WEEK ON THE NEURO FLOOR!!! I DO BELIEVE MOST OF THE THINGS STILL PERTAIN TO HIS SITUATION HOWEVER HIS GIRLFRIEND WAS HERE ALSO AND DID NOTHING BUT EAT AND MAKE MESSES FOR THE REST OF US TO CLEAN UP, MY BROTHER WAS THE EASY PART WHAT DO YOU DO WHEN THEN COME WITH EXTRA BAGGAGE LIKE AN S.O.??? MY CHILDREN (2 TEENS) AND I HAD A VERY HARD TIME WITH THAT PART

My mother passed away almost one year ago. It shouldn't be assumed that the guilt and depression goes away just because your loved one is no longer alive. It became necessary to place my mother in a facility six years prior to her death. I still feel guilty, but I know it was the only thing to do. This article (and others like it) could be more helpful if caregivers were aware of the lingering after-effects of caring for an elderly loved one.

I have a need to know more about Pick's disease

Very good tips. I like the fact how you delved into each point a little deeper and provided some very good insights. Sometimes, the medical condition of the patient involves secrecy and stigma. As a result, the caregiver cannot ask for help and not because the caregiver does not want to ask for help. Secreacy and stigma make it worse than the condition itself.

so much is familiar our family is thousand of miles away only see them once a yr. but do keep in touch through internet and phone we have one who we love dearly and he lives in same city but the woman he lives with controls and we have no close ties with her he tries but I don't think he fully understands what 24/7 is like nor do I want him to feel obligated under pressure

Hi - I would greatly appreciate some constructive feed back on the following - idea is still in progress - We are considering setting up custom accommodation suitable for wheelchair, disable & elderly access for pple to come to with carers, or have loved ones stay while primary carers take a break or go on a holiday. The business will be private so no private health would be claimable. We are toying with the idea of value adding to the core accommodation, such as (additional/separate cost ) an on site RN, Brain Injury/elderly/spinal Carers , Spinal Injury Mentor etc ...accommodation with an on site RN. We are trying to get an idea of what pple actually want and what pple are prepared to pay for. Our accommodation would be equipped with equipment to hire such as air electric beds, hoist, mattresses, wheelchairs, commodes, the list can go on and on....Acces to other professional who would be needed etc ......eventually we would like to add separate buildings/chalets that are suitable with the above also available so families can come to be somewhere different to their usual home, have a change of scenery without having to take all the house as well. .. I would love to here anyone's ideas or opinions Regards Di

Good article. I started in this journey believing my Mother would get better, and for a while after she moved in with us she was. But, I see from this article I've just been able to live in the moment. Now, with two young teens & a husband who I feel I've had to sacrifice my time & attention from I know I've got to get help. My Mom is needing more & more time, and of course our whole family life is turned upside down. I am realizing I have to make important decisions soon. So glad to have this site to see the big picture. And alleviate some of the guilt knowing others have some of the same issues.

Good stuff here. I found this article about dealing with geriatric parents with emotional disorders very practical, and sort of funny if a bit cynical: http://caregiveup.wordpress.com/2011/10/14/practical-steps-for-the-burned-out-bipolar-caregiver/

My mother has dementia and it seems everyone has an opinion of how my brother and I are taking care of her. We had to move her from my home to a nursing home after she took a fall at home. We were not given a choice to bring her home, but everyone seems to feel we just don't want to take care of her. This is certainly not the case since I have had her with me for 11 years. It is hard enough to make that kind of final decision without people who have no stake in her life giving us grief.

My adult daughter sent this link to me. While my elderly father with early dementia is in assisted living, remarks from others about not having him in our home have been very upsetting. Reading this article once again underlines the reasons my sister and I chose this solution for him rather than our homes.

I have been so far away from these issues since my mother died. But certain things resonate with me. The family issues just really started after she died--I am executor. Two heirs (one brother and his daughter) were nowhere to be found during the years of my caregiving and they only resurfaced about a year after her death. I acted as I thought my mother might to fulfill her wishes instead of how I am. It took me awhile, lots of guilt/actually making myself sick. (I did this to myself. It's been important to my recovery that I own this.) Taking care of my mother for about 10 years was a piece of cake compared to the stress of dealing with my family. It's sad, but I acted as an only child and it would have been much easier to have been an only child. Health issues: perimenopause, menopause, sleep apnea (CPAP therapy is my savior), heart issues that I didn't have before. I may have had all these anyway, but I can't believe that if I had just continued to have my own little life and job these last 10 years I would have been a very different medical speciment and human being. Still I wouldn't have left my mother high and dry. She wasn't in bad enough shape to be in a nursing home or in good enough shape to live on her own. This may not be the appropriate place for me to comment like this, but we who take care of family are unsung heroes. I followed a woman on a newsgroup who took care of her mom for more than 20 years--and who died first--the daughter did.

Agree this article should go to everyone who is involved in caregiving. As I read most comments, I tho't god bless everyone who has taken this on personally, and thank god my mom qualified for nursing home care when she could not walk, or I would have collapsed by now. ( And she has good care). My brother became alienated from me over property issues - which was very painful. But I can only control what I do. I think that anyone who is holding close to anger with siblings at being the sole caregiver must - as painful as that is - try to find a way to get whatever help and support is available in that area or state. You cannot make some else change,, and the more obsessed you become with making others do right ( by you) the more you feel pain. So you have to take a cue from this article, get help. And while I am awed by people who lovingly handle all care for incontinent and wheel chair bound, or demented elders, this is not going to work for everyone. Especially for those of us who are single, this can be damaging to our health and our relationships. Nursing home type care may be a good option.

Hello Anonymous, Thank you very much for your comment. If you'd like, you can post your question in our Ask & Answer section, here: ( http://www.caring.com/ask ). I hope that helps. Take care -- Emily | Community Manager

Hello: I thought this was a great article... and timely. I lived thru many of these things with my mom and family when Mom was ill. All the problems of caregiving and a lot I put on myself, by not setting my Own boundaries. Now, today, my father is hospitalized, and I don't have a good feeling. However, in the event of something terrible happening, I am guilty of NOT anticipating what happens when the last parent passes. I am the Executor of the estate. .... and what I need is information about Being (Or Not Being) Executor and all things related. Can anyone give some advice on this topic? How to prepare for the passing of the last parent, who has created a unique and stressful situation that someone else will have to unravel? any resources/links would be greatly appreciated.

The article title got my attention. The content helped re-enforce what I knew but hearing it again always makes it clearer in some way. I appreciated the way the article was written. It has a -- fresh feeling, and not too clinical, but yet had plenty of professional references and their unique items of advice and opinion. Well done! Thank you!

Hi tiredmomma, I'm very sorry to hear about your situation, that sounds very stressful! Unfortunately, family criticisms about caregiving are all too common. You may find some helpful tips on dealing with "unhelpful" or critical family members here: ( http://www.caring.com/questions/criticism-family-alzheimers-caregiver ). Another resource you may find useful is the blog post "When Your Help Isn't Any Help," here: ( http://www.caring.com/blogs/self-caring/when-your-help-isnt-any-help ). I hope that helps, take care! -- Emily | Community Manager

My mother in law is 87. She broke her hip and never recovered enoigh to walk and dementia set in real hard after the surgery. She had always said she did not want to go to a nursing home, so we are trying to grant her wishes and live with her at her home. Our children are all grown and gone, so there was no real reason we couldn't stay with her. However she has 3 daughters that refuse to help in any way at all. One is a druggie that would take all her medications herself. One says she is not mentally nor physically able to help,however she can loaf all day ever day and does not even work. The third sister is po because my mither in law made my husband her power of attorney instead of her. They want help at all, I have had to hire a sitter just to go to my sons college graduation and my sons wedding. They think they stiIll have the right to come here when they please without calling and cast insults when they do come. I cant take much more!!! My husband is torn between telling them not to come and not letting them visit. Please!!!!!!!!!! Any Suggestions!!!!

THIS IS A VERY HOT TOPIC WITH ME. mY BROTHER AND SISTER STAY IN THEIR HOMES AND REFUSE TO PARTICIPATE. i GET CRITICISM FROM RELATIVES WHO DO NOT PARTICIPATE OR HELP. MY MOTHER HAS DONE A LOT FOR OTHER PEOPLE. THEY DO NOT CAll, WRITE OR COME BY. I FEEL THIS VERY KEENLY. MY SIBLINGS ARE ANGRY THAT MY PARENTS ARE NOT PAYING THE BILLING OF THE SIBLINGS. THEY HAVE STRONG SENSES OF ENTITLEMENT. I TRY TO GET A LITTLE ME TIME AND I DO GET TO RELAX A LITTLE ON OCCASION. I DO NOT PROVIDE LIVE IN CARE AT THIS TIME. I AM HERE MAYBE 9 OR 10 HOURS DAILY FOR 7 DAYS A WEEK UNLESS THEY ARE IN THE HOSPITAL. THEY DO NOT SEEM TO UNDERSTAND WHY I AM SO HOSTILE AND THEY KNOW THAT THEY ARE REFUSING TO HELP OUR PARENTS. PRAY FOR ME

Great article. I have lost my husband as he was before, and I grieve about that. We were very co-dependent (in apositive way). I was an only child, and I have always tended to go only to my parents, when they were alive, or to my own children for help. It is really hard for me to ask for help unless it is a matter of safety or an urgent health problem. It is also hard for me to have someone come into my home and do things that I feel I should be doing. The "lone-soldier" advice was badly needed. I am going to re-read these 5 pages every day until they are somewhat ingrained in my outlook. Thanks for all those who commented, as well. I belong to a good support group, but it meets only once each month. I need more than that. I am glad I found caring.com!

Yes, All this is true but when you are in the middle of a persons last days and you are watching them slide down the "rabbit hole" f( we called it), you never know what direction the person will take. My mother lived with us for a year. She had her own quarters which was good. She could live an independent life but we were there to watch over her. The end days were the hardest. She had an undiagnosed color infection that cause sever bowel incontinence. We could not convince Kaiser that she was ready for hospice. She was losing weight at a frightening pace. It was a nightmare for both my husband and I. But I would not done it any differently. She died peacefully at home, with us at her side. It's a hard choice to make but helping a loved one through to the very end might possibly be the most honorable thing you do in your lifetime. My biggest word of advice: Develop a good working relationship with their doctor. Don't try to take this on alone if you don't have a partner. Be prepared for and try to prevent exhaustion.

OK, ya'all, here's an issue I never see addressed here - economic disparity. My Mom is 87, widowed and has always lived a comfy middle-class life, while I've never made more than 10 bucks an hour. Although I have worked hard, there is a limit to wages for people without the right college degrees here. I'm the family failure, yet the only kid within 1000 miles. I am trying to care for her from 2 hours away. She would *never* consider living in my rented "shack" with my her old discarded furniture (i am still using a formica dining table she bought it 1952...) and she & my Dad would not even visit my "dangerous" neighborhood when in my city 10yrs ago. I am also not the immaculate housekeeper that she always was, as a fulltime homemaker. To me, it isn't that bad, but she has her standards and I don't want to bring them down. She has enough income to live very well in her small town, but can't really afford "assisted living" apartment options. She won't go to my brother (who could maintain her lifestyle) because she dislikes his wife and also does not travel well. It would be so much easier to have Mom nearby instead of 2 hours away, but can't see a way to make it work. A friend suggested that I convince Mom buy a house thats up to her standards in my city and move in with her, then sell the house after her passing so that my brother will get "his share" of her estate. My brother gets upset at the thought of Mom spending her savings on a house - or, well, *anything* exceeding her current expenses. Since I'm the poor kid, I have no credibility when it comes to finances. If she makes moves to spend any savings, he is not going to like it. Creative solutions, anyone?

This article is a huge help! My 91 yo grandmother has serious dementia and is becoming verbally abusive and can be very hurtful. It is difficult to remember sometimes that it is not her fault and that I am not the only one is this situation. It helps to know there are others out there going through the same scenario. I am basically her only caregiver for 6 months of the year and the other 6 months my mom and I share the responsibility. Although, it is that much more difficult with 3 generations living together - needless to say I am 37 and living w/ mom and grandma! Hard to deal w/ emotionally for me as well as my other family. Any words of encouragement are extremely welcome and thanked!

The article described my situation off the bat. I relocated from my home to "help" care for our mother. Basically, it turned into my task because I have to move in with her into a 2BR/1B living arrangement from my home in another state with 3BR/3B. Needless to say most of my life is in storage and I am wasting money purchasing items I cannot find. Anyway, I am there with the space issue. I have to continuously remind myself that this is temporary as long as I continue to look for a larger place - a challenging task to say the least since real estate is about 500 times more expensive in this area.

Hugs to everyone who commented. Wow. Those are clearly the stages of situations in my journey with my husband. I'm getting 100% confirmation from my kids and those who have known him for at least the past 40 years that is time for a full time memory loss facility. I have tried a live-in, '3 days a week -come-and-get-him the pain and guilt) that a memory loss facility is exactly what is right for him first--and for me as well. They can give him the day-trip experiences, socializing, brain exercises and stimulation that he needs and will help him enjoy his days more than the routine now. He was and still is a person who does not like to sit so he paces all day long. Keep these informative thoughts coming--they are exactly what I have and presently experience daily. I know how right all this input is for myself and many others.

Helpful article, especially, the "Lone Soldier Syndrome" and letting go of old ways of thinking that prevent us from reaching out and asking for help. Remember, the more we know about our loved one's disease/illness the more our eyes will be opened to the road ahead. Asking for help gives another person the opportunity to connect with us--to give--as we would give if asked. Asking for help allows us a little relief and the ability to care more for our loved one after we've had a well-deserved respite.

The article was very interesting and Much needed advice. I see where I could use some of this and set boundaries which I have not done. I think there is an anger issue involved sometime. Our house is 1500 sq feet and there are 5 people living here. I have 4 generations of families in my house. Mom is 100 years old, the youngest is 10 years old. There is much conflict. Mom is "still in authority" altho this is my house. She has all the right answers and is great at the guilt trip. She very limited vision and very limited hearing so we have to almost yell for her to hear us. She gets around, makes her bed, dresses herself, and is not incontinent. What a blessing! I work and leave at 7:00 am and come home by 5:30 pm and she is ready to eat. I am exhaused by then. I have diabetes and MANY other health issues. I think sometime I may be the one who goes first. My brother is in another city and he is NO help. Sometime I just want to run away and not come back. The younger family has lots of issues, one grand daughter about to be 13 years old, the family was divorced and lots of anger still there. Our house is chaos sometime. I know if I put Mom in a nursing home, they would put her in a wheel chair and she would not last a month. But I am about to go crazy and my own job is suffering. I know I am at the point I need help and need to find out what is available for us.....just needed a hug today....thanks

This article was so good. I take care of both my Mom and Sister. Fortunately I have 3 other friends going through the same things but they only take care of one person. My Mom wants to be controlling and bossy. She doesn't like the fact she is not in control of things anymore and will try to keep me from talking to her friends or to the volunteer that comes every other week to help out who is a very good friend. My Sister has this Bose Player and she plays it when she goes to bed and every time when she gets up to go to the bathroom. It wouldn't be so bad but she has a CD changer so it plays 4 CD's before it stops. The thing is I can't hear it being Deaf but it causes the floors to vibrate and the vibration travels to my room and up my bed and tickles my eardrums and guess who gets no sleep. The other thing she will do is get up at night to make phone calls and buy things for which she doesn't have money and then I am stuck with the duty of returning those things or blocking delivery. Such fun! Not! My Mom feels sorry for her and allows this behavior because as she puts it, it is the only joy my Sister has. Now mind you we have a senior center only a couple of miles from the house and my Sister has only gone once and she enjoyed it alot. I know it would be good for her to go again and it would give my Mom a break and some privacy as well as me. My Sister uses a powerchair and the bus system which has transportation for the disabled would come and pick her up and take her there and bring her back 4 hours later. If she went at least 2 times a week that would be such a relief and a much needed stress breaker. My Mom can't go because I feel she needs the break from my Sister and also she is on oxygen and is limited by the 50 feet of tubing and the two hour limit on the portable oxygen tank. My Mom calls me a dictator and tells me I am mean because I won't let my Sister buy things when she doesn't have the money and when I won't let my Sister make phone calls in the middle of the night and won't let her play her Bose Player except when she falls asleep. I feel like I am fighting a losing battle. Right now I am getting a much needed break housesitting for friends for several days. It has felt so good to be able to sleep without interruption. My Brother came up from Arizona plus some friends are giving me the break. I can't thank them enough for this. I am sure there are others going through much worse. I love my Mom and Sister and would do anything for them but I can only do so much. I am learning slowly to say NO and follow through.

Oh my goodness, I thought the author was writing about me.....I went through all of those issues. And there were some times when I announced "I'm Done" I can't do this anymore. Yet, after taking a few breaths and a few tears remembering that I was frustrated with the DISEASE....NOT my sweet, precious mom. I continued on, somehow I always had the strength (after a little melt-down) to go on. My mom had vascular dementia, so I did not have any "anger" issues to deal with. I did have to deal with the total incontinence problem, and the confusion about not staying in bed at night, having to feed my mom and whenh she was still taking meds, to crush them and "feed" then to her in some yogurt. We had the double cylinder dead bolts on all doors, and a bed alarm, that was so necessary to prevent falls. Of course the baby monitor was needed, and yes I did not get a lot of sleep at all. Since 12/21/10 when my mom died, I can sleep without hearing bed alarms go off; however EVERY night I go over the last 3 days of her life. I now have all the freedom I want...and you know what?...I would rather have my mom back. What seemed so frustrating and difficult many times, now looking back at it all...it wasn't all that bad....I still had my mom....now I don't and the void is HUGE. So, please, remember as bad as it gets, nothing lasts forever, but there may be a day that you will have wished that it did. I know I do! But you DO need some time to recharge....I made sure a got a little time, but not so much that I felt like I was abandoning my mom, that would have added to my stress.

This is such general advice. I notice that you neglected my #1 stressor. All of the points you mentioned are valid, but manageable if medical & daily living issues are not a problem. Just getting to the store, or having to deal with finding handicapped parking at medical plazas are actually worse if you are single. The article thankfully does not fall back on the fantasy that everyone has a set of friends & neighbors and family that are there to help - - most caregivers are lone soldiers and sole breadwinners and ------------- the list is endless. No more advice about joing a group. In our city, groups are few, far between, and seem to be run by MSW's that like to use such chipper phrases as "remember to take care of you"

What I like about this article is it is a reminder of looking at the bigger picture in the process of caregiving ~ it is so easy, to forget to take the time for your own needs and the keeping in pace with your personal relationships, with your husband and or wife, and or your children and extended family. Let's face it, it takes an enormous about of energy to care for someone else, whether it be a spouse or a parent or a child, and as we continune on this path, it becomes exhausting. It is those times, that one must be completely devoted to self care, to be able to rest and rejuvenate, so that you have the energy to give to your other relationships in life, they suffer when you cannot be engaged and active in your personal relationships. I'm printing this article out and placing it on my desk, to be a reminder of the bigger picture, when I become so engaged in the day to day activities of caring.

All of this is certainly common sense. How can you differeniate between the needs of the caregiver and the needs of the dementia patient? My husband is content at home most of the time, but the stress on me keeping him content is overwhelming. His children are insisting on placement for the good of both of us, but the guilt is overwhelming for me....

Great common sense thinking. It really is hard to remember to take care of oneself -- but so important. Every day I try to spend a couple of hours either reading or on my computer in a separate place in the house while my husband reads through the papers. I don't know how much he retains -- it doesn't really matter because he's content, and I get needed "alone time."

Great article and very helpful. We must set boundaries and we must certainly take care of ourselves.