I think more caregivers would be willing to get help if affordable help were available. $25-$35/hour is expensive and most families are struggling to get by with all of the cost of living increases.

A caregiver stipend would be helpful to alleviate some of the caregiving stress.
(0)
Report

I've been told several times what a saint I am for taking care of my mother who was diagnosed with dementia two years ago.

My mother is physically fit, which is a blessing. She was an avid walker, so that has translated to her being a wanderer that will get lost.

Decades ago, she wanted to be my dependent, which a friend of mine says is an indication of mental illness. Her mental decline sped up when she continued to smoke and stopped social interaction. Her diagnoses was part alzheimers and part vascular. At this point, no more smoking as she has forgotten she smoked.

She does not recognize me nor my brother. She did pack and destroy pillows and cushions in her room until I took her clothes into my closet and removed the pillows and stripped both her room and bathroom.

She only remembers her first 8 siblings and not the last. Her only memories are negative comments from her mother and siblings when she was younger. She also has eczema, which is one of her go to excuses if she is caught doing something that is wrong. That and "I can't remember." She is also sneaky and talks about dying a lot. Other family members have heard her talk about wanting to die. She deteriorates mentally every few months. But there is always something being destroyed - furniture, food or toilet paper in odd places. She is looking more blank.

My frustration is that it is very hard to get help of any kind. Because my mom is fit, she needs someone to occupy her mind to keep her from destroying. The mental illness aspect is foregone at this point. I also can't stop her desire to want to die. Or the sneaky behavior.

All of this causes negativity in a very calm environment, which is supposed to be good for dementia, but not necessarily for mental illness or dysfunction. The latter require a distraction from that persons own thoughts.

I'm not skilled to give her constant attention. Nor do I want to as this is not my field.

Further, grandparents have a role. At this point my mom doesn't know me, her grandchildren. I'm confused at what we are doing as a society. Someone I described her care to told me it was "chaos" and a "burden". I just do not know what I'm doing where I feed a person who, perhaps due to mental illness, went down a path of mental deterioration and now knows no one and spends her time destroying.

I read what's in the forum and there are terrible stories. I can tell you, if I'm diagnosed (I've been told I have a 30% chance), I've told my kids I want to be euthanized. We are our memories. If I don't know who my kids/friends are then who am I?

Since I have to deal with this negative home situation, it would be great to have some sort of help.
(1)
Report

It's so important for family caregivers to enlist dependable, skilled respite care services before they reach the point of burnout, depression, or other serious health concerns.
(1)
Report

I think I avoided burnout when caring for my mom at home while working in a very stressful career and dealing with an adult child with a mental illness. I found that I wanted to help my mother so much and felt happy in her company. After work, I would come home and be so happy to see her and talk one on one to her. I used to dislike having to go out after supper to attend work-related meetings. I was also fortunate that my husband helped me as I could not have done it alone. My mother lived well into her 90s and I feel blessed that I had her for more than 60 years. It was a privilege and I learned so much from her. One of the things I did was ignore any little things that came up with other family members. This was not always easy, but I am glad I did. I don’t blame my mother or my father for anything that happened in my childhood or adulthood because life can be tough on those of us who do not come from privileged backgrounds. I also did not want to be like my father’s sister who blamed my grandmother for childhood poverty and would engage in a cycle of blame, verbal abuse and estrangement and then repeat. My grandmother was widowed at age 30, with 8 children, at a time when there wasn’t a social safety net. My aunt also cut me off, telling me not to visit my grandmother or she would cut my grandmother off. Since I lived in a different community and my aunt lived near my grandmother, I complied because I wanted my grandmother to have someone nearby who would visit her. I learned that adults sometimes have to make very hard choices. I continued to write letters to my grandmother though, but I was severely judged by some family members for not visiting. I never did tell them the true story. I could have ‘aired all the dirty laundry in public’ but decided that it would just make things worse. I made an adult choice not to blame but to handle things in a private and dignified manner. I don’t think we should lay blame and label our family members with psychiatric jargon. We should just try to resolve the conflict as best we can with the understanding that no person or situation can be perfect. My grandmother was a very spiritual woman and I learned to trust in a Higher Power.
(2)
Report

Does anyone know how to go about finding out how the money of an estate was spent by the power of attorney? I am sure there is foul play right down to having her life shortened by not feeding or hydrating her purposely,then dosing her with meds and letting her choke on her own spit up. Its horrible to know people are so cold.
I just want peace for my own mind that things were either kosh or foul. But I wont be ok until I know for sure? How can I find out where the 300k went and the money that she had left me is supposedly all gone too? thanks
(0)
Report

I saw the resources, so called, at the end of the packet. Most of them come with costs that I cannot afford, and as lower middle class, I am told that I make too much to qualify for anything at all. After a few looks, I discarded the packet. Too discouraging to look at what could be available if I quit my job and we become homeless, or living with our daughter in very cramped quarters with the bulk of our belongings in storage. I have zero resources for hiring anyone. I am not quite burnt out, but am getting very close. Our daughter does all she can with her own full time job, house with an AirBnB and two children of school age. Her older siblings live far away and could not care less what happens here. There is little to no contact with them, so they are totally out of the picture. I finally joined Amazon Prime so I don't have to go out for groceries; not having a car left me constantly asking for help; it was never offered and I always felt guilty about asking for rides. I have my own health issues, of which one of them is painful feet, so not having to walk through the grocery store is a real bonus. Yes, it is Whole Foods, but due to our allergies most of what is available in most mainstream supermarkets causes either asthma issues for me or eczema breakouts for us both, so WFs, and being watchful of spending is our only other option. I do have a garden, but due to inattention borne of little time, it is pretty wild and weedy. About all I have time for is watering, and even that can be chancey. I am the main caregiver for my husband, who is not ALZ or Dementia, but has a slowly failing heart. Not quite bedridden, but housebound for the most part; now and then a walk outside. He can be quite abusive emotionally, and our daughter is aware of it, but there is nothing either of us can do. I told him that when he starts that I am walking away, period. And I do, which has improved it a bit, but he is, like my mother was, angry about his circumstances; he is only 66, so it is a bitter pill to swallow, but that anger is visited mostly on me, and sometimes on our daughter, but she won't put up with it, either. Caregiving, for me, is mostly a thankless job.
(2)
Report

Taking care of my husband who has ALZ has been a challenge at times but nothing I can't handle. Why do I sometimes break out in tears for no reason which last less than a minute?
(3)
Report

Caregiving can be a very horrendous soul-destroy process--especially when the loved one has lost control of their bowels and bladder. It seems they just prefer to SIT and do nothing and mess all over themselves and you have to pretty much pick up dead weight..they simply don't want to move. What makes it worse..they are sometimes fighting you--badly. You just want them cleaned up and they resist. Now try doing this everyday..
(6)
Report

Thank you, Carol, for ALWAYS watching out for caregivers. Your advice is right on target. I did not realize the stress burden of caring for two aging parents at the same time with one crisis after the next and trying to hold down a job and handle family life with very little support was causing me to spiral downwards towards a nervous breakdown. It happened and now six years later I have regained my mental and physical health. If you are in the tornado (hurricane?) of caregiving right now... you must heed Carol's advice immediately... you will lose yourself if you don't and everything else that is sucked down the vortex with the chaos of caregiving.
(3)
Report

Incredibly, I have thus far survived my Mom's terrible decline and her passing away after the rapid stage of decline occurred for nearly 2 years. Then when husband's sister passed away we got thrown right back into a life on hold and in limbo and worry. During my Mom's time of being bedridden in my home for 2 years, I suffered a spontaneous retinal detachment and operation. I asked for help and hospice evaluation during her second hospitalization and was ignored by the hospital staff. A home nurse practitioner was to prescribe badly needed antibiotics for a UTI and the loser disappeared. Mom's regular doctor would not prescribe anything because she had a catheter. She ended up going into delirium and hosptitalized. Three stressful "rehab" stints in 2 terrible 5 star Medicare rated nursing homes where and aide dropped her and broke her ankle, and then the final "rehab" in a better nursing home where it was finally realized that she was not improving and put on hospice. I took her home where she had privacy and a lovely room with a wonderful hospice team. The time before hospice almost killed me. All this help seemingly available is largely hollow words. No one would really help until the hospice team came on board. Now my mom has passed and because my husband's sister died, we are now facing his ageing mother at 88. I can't get a break nor anyone to help. MIL's doctor spends 5 min. with her and tells her she will live another 10 years. The one thing I learned is that most people run and just want the paycheck. My faith in humanity went down the drain when this happened to my Mom.
(3)
Report

There was very little in thus article that I did not already know. My concerns are several: When you are a 24/7 caregiver there is rarely any day and or night that allows for real rest. I try to follow a routine throughout the day and evening. But his sundowning more often than not causes agitation and refusal to stay in bed, often getting up at least 5-6 times asking to be taken home, frightened that someone is breaking in to our home, obsession over his pets and more. That pretty well disallows being on a regular sleep schedule at all. Quite frankly I have not had a restful nights sleep in three years. To reduce stress you suggest 10 min. Showers-not at all possible. Once I do finally get him down and sleeping, I rely on the television for helping to rachet down my stress and anxiety. I also do meditation in the mornings and try to enjoy a few quiet moments if he sleeps in. I do journal and listen to soft music and light candles and incense-all of those things, but all too often that effort is interrupted by a staggering and confused man. I have tried saying"it just is what it is, I must survive this" but I am lonely and very frightened as his aggressiveness and agitation increases. Everyone says "there are resources" you must use them. I have NO money for respite care, though I have received two grants over the two years his dementia has increased. The grants were for about 40 hours each-which is obvious-that does not go far at all. But that is all due to end in September. As far as turning off my mind-the financial stress we are under is something I have to be on top of all the time as well as some other family issues. I truly do not mean to be negative here, and I do appreciate simple beautiful joys. But my husband does not know who I am most days and does not like me. I don't like me either. I have several health issues that sap my energy by noon even though I really try to pace my work each morning. But just dealing with his incontinence, keeping him clean and doing the wash, and preparing simple healthy meals, is the reason I wake each morning with tears. Get a haircut? Really? Would love that, but there is nothing in my very small budget to make that happen so I cut my own-not well, mind you, but I do cut my hair and his too. Just his cigarette budget is sometimes awful, as I am told that I need to fight one less battle on that front as he has smoked for 65 years and tried everything to stop. That is at a cost of about $35 each month even when buying off brands. He does not remember smoking for literally 5minutes. And so...I will try. I will.
(6)
Report

I'm caregiving in a family that never had any boundaries - and it sets them off when you say you will not do something or be held responsible for things that they should be looking after. I agree with others posting that it's like sink or swim - and there's not enough resources out there to help ( and I expect any caregiving counselor to have actually BEEN a caregiver at some point - otherwise they have no idea)
(3)
Report

Nine months ago when my mother fell, broke her hip and had to spend 3 weeks in a nursing facility for physical therapy, I didn't really think with my head about where to go from there. Instead I used my heart because she is my mother and I couldn't just "throw her away". I quit my job of 25 years and now I am traveling with her 600+ miles back and forth from her home to mine. Like I said, I didn't think it through. I am fortunate to have a very (and I mean VERY supportive), spouse.

She is not really that difficult to care for right now, but her short term is hit and miss. She can get dress herself and get in and out of bed. She gets around well with a walker except outdoors on uneven ground where I have to guide her. I have to manage her medication or she won't take it, and her bathing (which is a battle). Her: "I just took a bath yesterday." Me: "I know it must seem like yesterday, but it was actually Xdays ago." Her: "LIAR! B***h (under her breath)."

Now I'm wishing I had been prepared to make a more realistic decision because now I'm feeling like I put my family on the back burner while I care for a (still) unloving, unappreciative, passive aggressive, person. I don't know why I thought she would be different. She is still that same person I remember except now I voice when I think she is in the wrong or call her out when she is being mean, (especially to my young son or my grandkids).

My husband says that I am anxious all the time because now someone is controlling my time. That is true, but I'm also becoming resentful of her as well as other family members that don't even call her to see how she is doing. I feel isolated because I'm stuck at home waiting for her to finally get up and start her day (usually at 1:30 in the afternoon). I used to try to get her up earlier, at least by 11, but most of the time I can't stand being around her.

There is this toxic negative energy building up in my home and I don't like it.
(11)
Report

I don't need to read this to know I have caregiver burnout, I am not in good health by self and feeling so overwhelmed. ı get no help from family members and beginning to feel domed, don't know where to turn....
(6)
Report

I've just found this website and am finding the articles so helpful. Thank you so much
(3)
Report

I love what you say here.
(2)
Report

Yes, caregiver burtnout, it's easy to say, take care of yourself. Who then do I call for help, no one wants to be with my abusive mother.

What help, please tell me I need it yesterday, I don't know if I can survive my parent. I'm not kidding
(6)
Report

I was laid off from my job about the same time my mom was diagnosed with cancer. I did not go back to work because she needed so much help. I definitely can not afford to hire help and I am beyond burnout.
(3)
Report

As we continue our caregiver journey with our loved one(s), it is so easy to forget to take care of ourselves. In my opinion, NOTHING in life prepares you to become the parent of your parent. The dynamics are so difficult to navigate, especially when the parent/child roles are reversed. I'm not an expert, nor do I claim to know it all. Half the time I wonder if I know anything! Both my parents have dementia simultaneously. I was the sole caregiver for 2 years. Along this journey, aka a roller coaster ride through h*ll at times, I've been loved, questioned, appreciated, taken for granted, yelled at, threatened, hugged, and ignored. Sometimes all of those have happened in a single day. By outsiders, I've been called a Saint, an amazing daughter, a strong person, and a life saver. What is boils down to is my parents are ill and need help. Since the financial burden is enormous, the "choices" for their care are limited. In this lottery of life, I along with most of you reading this, drew the winning ticket. Think of it this way, since you won the "lottery" be sure to treat yourself to some rest and relaxation. So much easier said then done, but crucial for your own health and well being. You not only need a break, you deserve it.
(9)
Report

I think I fall into the category of burnout. My parents are both ninety nine and soon one hundred. Both have advanced cancer along with a host of other issues, not sleeping, poor eyesight, stability,etc. the bulk of their care on a daily basis is provided by me. My mom can be very stubborn, won't wear her hearing aid, won't accept outside help, use her walker to provide stability when walking, etc. my dad is impatient and demanding. He has a cough the dr believes is caused by Gerd. He will follow the Dr' reccommendations up to a point. He still eats a big meal at night,has alcohol at that time, eats some foods that exacerbate the condition, and gets angry because he coughs. He doesn't sleep well and instead falls asleep during the day. Then either he coughs or tosses and turns while in bed. He gets up and starts the cycle over. He is used to being active,but my mother is afraid to be alone so she won't let him go anywhere, golfing for instance. He is a caged tiger and takes his anger out on me. Case in point, my mom had an eye appt. at eleven the other morning. She has macular. I told my dad I would pick them up at ten fifteen. My phone rings at ten with my dad yelling where are you. I arrived at ten fifteen to be greeted by him screaming that I had screwed up and they missed the appointment. He shows me a slip from the doctor that indeed said ten fifteen appointment, but for April not May. I then played the confirmation call with the appropriate time to him. He moved on to the next thing to yell about. Then my mother stated she was not going to anymore eye appointments which started another fight. When I go home it gets no better. My mother in law lives with us and has late stage dementia. During the day she is okay but late afternoon she gets antsy, irritated, nasty, take your pick. Her main goal is to get into the kitchen and either wash dishes or set the table. She cannot stand or walk well, has poor hygiene, incontinence, and very poor eyesight. She operates by feel. If allowed to handle eating utensils,dishes,cups,silverware she puts her hands all over,on,into, whatever it is she is trying to do. Consequently we don't allow her to do anything in the kitchen. This leads to her asking what do you want me to do over and over. My wife will give her a simple task, just not our eating implements . That isn't what she wants to do so she starts in again what do you want me to do. Once in a while my wife will allow her to put dirty dishes in the dishwasher while watching her. That isn't what she wants to do. She rubs her fingers on each thing, rinses under water and takes a dish towel, wipes it and goes to put it away. My wife won't do this often, and never when I am home. I own a restaurant and dishes are to be done in a safe manner. Back to my dad, because he can't sleep he wants the doctor to give him a sleeping pill. The doctor doesn't want to given health issues my dad has. He suggests another option which if it does not work immediately my dad stops taking. It goes this way with every med he takes. Lastly,driving, he was driving up to Christmas,but soon after had a bladder infection which has left some confusion to go with very poor eyesight. The last few days he has been hounding me to register his car. We had the conversation the other morning on the way to my mothers appt. I asked him a moment later do you see the turkey in front of us ? It wasn't fifty feet away and was quite large. He couldn't see it at all. I also own a seasonal business and open in about three weeks. For the next 25 weeks I work seven days a week at twelve hour days. My sister is going to help out,but lives an hour away which means I will get all the calls. I am stressed out to say the least. I guess this is burnout. Sorry to be so long winded.
(5)
Report

As always it's a great article and on point. My "problem" is it's easy to identify but it's not easy to get the "help" you need. All the resources out there are great in theory but I can't seem to get them to materialize. Either monetary, time, or not enough actual hands on resources are available. I finally hired a companion caregiver to come in two days a week for 4 hours each time and it helps my mom to get out but I still feel more drained than ever before. Most days I am too tired or numb to even cry.
(6)
Report

This is a wonderful article and I appreciate all the advice. I noticed there is no mention of when the person you are caring for absolutely refuses anyone but you to help them? My Father will not allow anyone to enter his home except for myself (his daughter) and his son-in-law to help with groceries, general house maintenance, groceris, laundry etc... There are other siblings but they live too far away to offer any assistance. We've requested someone I know who cleans homes, does shopping etc...to help and the answer we were met with was no. We've asked to have Meals-on-Wheels delivered to help take some of the burden away, we were met with a no. How do you make someone do something they refuse to do? Also, before my Mother passed away we called in emergency services on more than one occasion, they were only allowed to visually assess her, she refused to receive any medical care from them. I realize this a very generalized list of issues and only barely touches the surface of what we've been going through. Can someone direct me to advice on parents who are refusing to except help from anyone except their family members?
(6)
Report

After two years of nearly breaking my back caring for my husband, I moved my husband to a different medicare advantage program. The new group believes in keeping people at home as long as possible instead of sending them to a nursing home. With their help, my caregiving outlook improved tremendously. Physical burden problems can be relieved through use of hoyer type lifts and proper use of gait belts and other aids. It is a rare insurance group that cares about the "caregiver", and helps the caregiver obtain and use equipment. The rental cost of the hoyer lift is significantly less than the cost of having an aid come in every day to help move a patient.
(3)
Report

Yes, good point, Linda22, about parents classifying it all as helping.

Right now (although my employment situation may be changing in the not-so-distant future), I do have a lot of flexibility with my time. I do not like to spend a lot of time with my mother because of her extremely controlling ways. She is always right, she considers my opinions to be without merit, and insists on controlling every last thing. She is borderline OCD.

At least she does consult with me for doctor appointments. Starting next month, I will be there for all of them.
(3)
Report

cttn, what's key to remember is there is a distinction between helping with necessary things (groceries, doctors appointments,picking up meds) and enabling parents to keep their usual way of doing things (five store shopping trips for bargains). Many of us get drawn into the parents classifying all of it as helping. It's incremental. I use the phrase "helping me to help you" with my mom. That means as long as I get the important things done for her, I have the latitude to do it in a way that integrates with all of my other responsibilities. I would suggest that you have input on when she sets doctors appointments to avoid conflicts on your own schedule.
(4)
Report

Hi Jazzy2,

The packet can be accessed through the blue "Zarit Burden Interview Packet" at the end of the article.

Your dedication to your loved one is admirable, but please remember to take care of yourself as well. There are a number of free and low cost resources available for caregivers, but it often takes some digging to find them. Make sure you check out the last page of the burden packet to see if you might be able to benefit from some of the resources listed there.

Best of luck to you, Jazzy2.
(0)
Report

Where did you find the packet? Of course, I don't really need it. I already know I'm burned out but I took a vow of "in sickness and in health."
(0)
Report

My husband is in the first stages of dementia, and I struggle with trying to anticipate and to help with his memory problems. Even that is exhausting. But I know it will get much worse. I am saving the suggestions here so that when I need more information, I will know where to get it. Thank you.
(1)
Report

This is one of the best resources I have seen. Not only is the Zarit Burden Interview Packet revealing in assessing caregiver burnout, the resources at the end really have value in helping to deal with caregiving and the challenges that come along with it. Thank you so much!
(0)
Report

freqflyer writes: "I believe many of us here wish we could get into a time machine and go back to day one of when our parents first needed our help. I know I would have set boundaries and learned to say "no" without feeling all the guilt and sleepless nights."

That is the number one takeaway that I've gotten from this wonderful site. Of course, my mother gets nasty when I try to set boundaries, but so far my burden is NOTHING like most on this site (I expect it to increase). The next boundary-setting exercise is when she gives up driving in a few short weeks. I have decided that I will take her to church and to doctor/dental appointments. I'm sure she will want to go grocery shopping, but I'm not willing to do that (at least not every week). She can just give me a list. It will upset her that she won't be able to direct Daughter-Slave as to which exactly can/jar/box/carton to take ("Take the one in the back! With the best expiration date!") and that she won't pick out her exact peach, but too bad. She is totally oblivious that whenever she goes anywhere that it takes HOURS.

And she will have to give up one of her hobbies (she calls it a game), which is getting the absolute best deal on everything. I will NOT drive all over town to save her $.50 on something. I expect her to not take well to my boundaries.

I realize that even going grocery shopping is part of her socialization. But I look at it that she wanted the isolation of no longer driving. Fox News 24/7 will be her main socialization. She will be isolating herself, as she could have considered senior living, but absolutely refuses to so that she can cling to her "independence."
(11)
Report

Subscribe to
Our Newsletter