How do I handle a dementia Mom who's crying about things I can't change nor does she understand or remember?

I don't know how you care for someone with that level of dementia and disability, while maintaining a job. I would not even attempt to do it. You are certainly devoted.

I will say that I think your expectation of your mom being patient, waiting for you to be free, being appreciative or understanding is not feasible. When the brain is damaged as it is with dementia, the patient has no ability to do those things. I would read a lot here and other places about dementia and how it affects not just the mind, but the body. There simply is no way they can behave the way we think they should. It's not intentional on their part.

It's not unreasonable to have your job as a priority. I would likely find some outside help to come in and help you or find a place that can care for your mom. There is so much involved with a wheelchair bound person with advanced dementia, that I don't know how it could be handled in the home with limited resources. Perhaps some people here will respond with their suggestions.

I forgot to add that I would consult with her doctor about medication to help with her anxiety. Cymbalta worked miracles for my loved one and she stopped crying and was quite content. I would examine the options.

This is a quid pro quo response - if I offer suggestions, will you in turn offer advice on how you manage to concentrate on what is properly a highly focused goal oriented job while also taking care of your mother? Seriously, I don't know how you do it and would appreciate some advice. Sometimes I can't even focus even if I do write down the tasks I need to accomplish.

That being said, when you're not working at your paid job, what do you do with your mother that she enjoys, and is there any way you can create a situation that she can do this on her own?

Could you put on music she likes and call it a rest time? Could you tell her it's time for her to refresh herself by taking a nap? If she can drink tea, could you give her an herbal tea (assuming it isn't contraindicated with any meds she's taking)? The she could drift off and have a nice little rest.

What I suspect is that she's very reliant on you and afraid to be alone, even if you're still there in the house, although apparently she also doesn't seem to be able to create happiness for herself. Is there a reason for that or is that her personality? What does she enjoy? What activities do you do together that she likes?

Perhaps start by taking a 5 minute or so break every hour during which you're aware from her. I don't know if she'll be able to get used to being alone, and can gradually be weaned from a very short period to a longer period, but it's worth a try. Start slow with small breaks alone and gradually increase the time length.

Does she read? Reminisce and Reminisce Extra, and Country and Country Extra are great magazines for seniors. The first two have a lot of stories from WWII and the Great Depression. The Country series is primarily beautiful photos of nature, farms, children...the kinds of photos that make people smile and relax.

Is there anyone who can visit at that time, perhaps a neighbor with a dog that could occupy your mother's time? Can you think of anything else she could do while you're occupied? Set the table while sitting in her wheelchair? Fold laundry?

I remember my mother used to offer to help and I'd try to spare her the difficulty of getting up and down and do the tasks myself. Eventually she'd tell me she was tired of sitting and wanted something to do! So I tried to find tasks she could do and feel useful. Perhaps that kind of usefulness and sense of being needed might be helpful.

Just thought of something else. There are large piece puzzles for children, which I bought for my father when he was recovering from a long debilitating period and was being given psychotropics which affected his clarity of thinking. He could fit the pieces together by moving them around to test interconnections.

It might be something that could challenge your mother, but it might also make her frustrated. Might be worth a try though.

Dear GardenArtist,

Per your request, "This is a quid pro quo response - if I offer suggestions, will you in turn offer advice on how you manage to concentrate on what is properly a highly focused goal oriented job while also taking care of your mother? Seriously, I don't know how you do it and would appreciate some advice. Sometimes I can't even focus even if I do write down the tasks I need to accomplish."

I work and sleep. I don't have a life, GardenArtist. I am an unhappy person, who isn't managing this well at all. Hence why I am consulting AgingCare. I have to make my occupation a priority or I will have no income. I have become very efficient at what I do, put in extra time, work weekends, and after my mother goes to sleep. I don't take time for my personal life - hence that is falling apart and so am I. So I really don't manage well at all. I am keeping my job and my boss happy, and those I manage on my team. I am lucky I can do my job at home which provides me the luxury of 3 extra hours each day - which add up during the week. And I my workplace has no idea of what is going on.

My husband is very supportive and takes the night shift. I cook meals so that we have "left overs" to heat up and easier meals. I try to keep organized at home so that there is order and cleanliness. My mother needs have come first for the most part. And I have two day persons who comes from 9am to 4pm M, F, and T,W,Th. Weekends are tougher and we take my mom for long rides. Since I found out my Blood pressure is 150/100 while with my mother even during "outings"and since I have opted to barter tasks and my husband takes my mom on 4-5 hour car rides site seeing between WI and MN and leaves me to do the house and laundry and cook some meals in that time period and I get to be alone and work on these things.

I have ruined my teeth by grinding day and night and have had horrid mouth and jaw pain. I am depressed, but try to keep that from affecting my work and clientele and co-workers and I keep my situation to myself.

I have tried the puzzle thing, my mom was Queen of Chinese Checkers, now needs help making moves. She used to paint beautiful oil paintings and cards, but now says she has to be alone to do that. Probably because she can't. Though I'd be willing to try her again at that. She also sits on our screen in deck in back and watches the wildlife (turkeys, pheasants, deer, raccoon, birds, feral cats) during the warm weather.

Not sure that I've helped you with anything, GardenArtist, but this is my life.

You had some good suggestions and I appreciate and thank you for them.

Best to you--
LastOne

I don't see how you are going to keep this up. I'm retired and I don't live with my parents but Ive had to stay with them and care for during various medical events. It is exhausting. Dad with dementia, mom with her medical issues, cooking, fixing, cleaning, keeping meds straight, doc appointments, laundry and on and on..........Unless you plan to retire soon and devote your life to careing for mom I think you must consider a care facility for her. No one could keep up with what you're trying to do.

Just looked again at your last post. Grinding teeth? Blood pressure? You have to know this can't continue.

LastOne, I have to say this to get your attention.... 40% of caregivers die leaving behind their love one. Not good odds. Sadly the stress will get the best of you, and create a lot of serious medical conditions.

How do you fully concentrate on work with having a loved one under the same roof that needs your attention? I can't concentrate when the cat is talking to me, and he is a chatter box wanting attention. There are times when I need to shoe him outside, can't do that with an elder.

If you became one of the 40%, would your hubby be able to continue caregiving your mother? Have you thought what would you do? Or what if something happened to your hubby? Bet your Mom would be placed in a continuing care facility. You never know, even with dementia, she might enjoy being around others of her own age group.

This is the conversation your family needs to have.

Is it feasible to get full coverage for her while you are working? Could you add a third person who works from 4 to 6 each day?

I worked from home for several of the years I took care of my husband with dementia. I did get distracted and interrupted once in a while, but it was nothing like what you are reporting in the late afternoon. Yikes! If she is satisfied with attention and it doesn't have to be from you, then I hope you can arrange that attention. It is a less drastic solution that a care center. A care center may be necessary in the long run, but more in-home help may extend the time you can keep her with you (if that is what you want.)

LastOne, I'm so sorry to read how much the caregiving tasks have affected your emotional and physical health. I am truly amazed that you're "holding it all together" to continue working, at a high level position. I don't think I could, so I admire your tenacity and perseverance.

It does help me because it's easy to become overwhelmed and slip from that "how to handle" issues and tasks to the "it's just not possible!" mind frame. I have to frequently remind myself to think "how" and not "can't do it".

Thanks so much for sharing your very personal feelings and experiences on caregiving.

Take care of your mom at home, Dont put her in a nursing home. They have killers in those places. Read my other posts here. I lost my grandparent at a nursing home due to their gross negligence. They just left her there abandoned by a window. I had to clean her and help her to the bathroom. They were not giving her all her medicines and when we lost her they were not returning our phone calls and they were trying to give us the run around. Someone suggested to you here that at home you have limited resources, really? I am sure in my case that if my grandmom had been on the street which has fewer " resources " she would have got more attention than the attention that she never got at the nursing home where they literally killed her. They discriminated against her and they complained that she could not hear. Was that her fault? These are the kinds of beasts that you would have to deal with if you decide to drop your mom at a nursing home. Take my advise, get some help at home. Keep her with you if you love her. I had my grandmom under my care for 35 years. I went to school and worked and I was still keeping an eye on her. Eventually I did the extreme, quit my job to give her all my attention 24/7. I know not many people are willing to do that. Plus I lost my marriage because I tried to raise a family and my ex rejected me for being so devoted to grandmom. I tried to understand everything that was happening to her. Her doctors commended me and used to say that they had never met anyone like me. I could go on and on with the things that I did for grandmom. In your case you will need help because it will get complicated and unbearable for you. I even washed my grandmom at home, but she was always able to clean her private parts herself. She was the sweetest person in my life. Love your mom. Keep her with you. If the end comes, as it did in my case, it is best that you stay with them hugging them not leaving them with animals that are only looking for money from their insurance companies. After all I have seen I know that I would not want to die in a nursing home if I had a family. I would rather die before I even let those beasts touch me.

LastOne, I don't mean to add to your frustration, but can I ask about why it is important to you to care for your mother at home and whether you have considered alternative options?

You cannot make your mother happy. For a problem-solver, that is a nightmare. My huge sympathies on that point.

Wow, what an answer. The best place to be with a loved one is at home, a nursing home or a hospice will not add to their well being. When a relative gets to that age the go into a psychological regression, you have heard about this. They feel MOST comfortable at home with the rest of their family not in some strange unknown place with beasts that do not care one bit about them as a person, except for the money they get from their insurance company. Being with their family adds support to them. They may be suffering from dementia, but the fact that they are spending their time with their most significant people in t his world gives them immense support. I do not believe in nursing homes. The popular idea that nursing homes and hospices will help our relatives does not exist. If our relatives need medical help they get it at a hospital, once they leave the hospital they should go live with their family for support. Most other countries believe in this, only the United States is still sticking to this idea that someone else will care for our loved ones. That will NEVER happen. Get help at home if you cannot cope with your loved ones, but because they are your family you have to give them ALL the support you can. Dont throw them away like they are worth nothing.

NY, you're entitled to your point of view. Different points of view do exist, however.

NY, some of us don't live in places that are large enough to accommodate an extra person, nor do we live in places that are wheelchair accessible. Some of us live far from our parents and can't move. Some of us thing that leaving an elder in their home with caregivers coming in is a recipe for disaster and have found it so. Some of us want a group of qualified professionals with supervision, oversight and accountability to the State caring for our parents. There are choices, and we are free to make them.

Lastone, has your mom been seen by a geriatric psychiatrist ? Sometimes antidepressants and or antianxiety meds can make a big difference in behavior in dementia patients. You can't keep going with the stays quo. Start thinking about where and with whom she will reside when you have a debilitating stroke.

LastOne, I won't add anything to the discussion of things to do, since you've already received a range of options. I wanted to talk about the tooth grinding. It can be due to nerves, but sometimes it is an irregularity in your teeth that is causing the problem. Go to the dentist. The dentist will help correct the damage and can fit you with a protective cover that you can slip over your teeth to prevent you from grinding them down any further. I don't know if the bruxism happens when your asleep or at other times, too. You can wear the shield whenever you have problems. The shield is nearly invisible and people who wear them say they are comfortable.

I have a feeling you need to set aside an hour or two for relaxation with your husband each day. I know you are both under stress, so it is important to have some time set aside for both of you. You're not just employees and caregivers. You need to have a life of your own.

Since your mother wants to be home, would it be possible for her to go into respite care occasionally so you and hubby can take a break and be together. It can be expensive, but having a week or two of respite might be welcome. This can be more stress-invoking for some people. If you think you might like it, you may want to check your local facilities to see if they offer respite care.

One thing I've learned in caring for my parents is we can't make them happy. We can keep them safe and cared for, and we can try to behave in a way that doesn't add to their unhappiness. But we can't make them happy if they are not happy with the way that life is. We shouldn't feel guilty, because usually it is not us. It is loss, old age, and disease that takes the happiness.

Lastone, you've gotten some great advice here. Since reading more details about your situation, I might add that sometimes mood, fears, crying, in the dementia patient can be helped with medication. I would explore those options with her doctor and/or a psychiatrist to see if any may help relieve her anxiety and/or depression.

I would also examine the level of care your mom currently needs with what she may need as her dementia progresses. The time, attention and strength required increases when there is incontinence, and especially if they are wheelchair bound as you describe your mom.

Last One: listen to freqflyer. If you continue this way, you will become ill and then your mother will have no one. Have you checked to see if there is adult day care anywhere in your area? Ditto on what others have said also - dementia patients are not the same people any more. They become selfish, weepy, negative, difficult and you can't reason with them at all. Don't even try. Also, in late afternoon and early evening they sundown, which means they become worse. My mother is 100 and still going strong, but with dementia she is horrible to be around. She is in AL, but even my visits to her and taking her to doctors, etc totally exhaust me. The doctor put her on Zoloft which has helped with her obsessions and extreme negativity. Now she is merely negative, not super negative and her mood is a little better. Talk to your mothers doctor about medication and also some help for you. Don't run yourself into the ground!

I forgot to add. When my loved one cries about things that she can't articulate, I just try to comfort her. I make sure she not in pain, having any medical issues, but when she cries around me and says she doesn't know why, I tell her that I've taken care of the problem. No, she doesn't know what the problem is and neither do I, but I tell her it's all been straightened out. This comforts her for the moment. She will forget about it later, but for the moment she feels safe and that's all we can do is get through the moments. Thankfully, these times are not common when their medication is proper and they don't feel as anxious.

It would not do any good for me to challenge her about there not being a problem. That never worked, so I just say it's solved, fixed and now all is fine. This is the only thing that worked with my loved one.

Many of us have experienced our loved ones crying for no reason. Mom does that when she is frustrated or upset. I think it is because they feel helpless, not themselves, or in pain, old, weak and hopeless. I have told my children if I become like that, negative, sad and feeling hopeless - please please please make sure they put me on some medication which will ease my mental suffering. I don't want to spend my last years bitterly unhappy if it is possible to do something to help me.

Two things: My Mom had her meds changed which have helped somewhat, and she's in an excellent nursing home (probably much to the chagrin of some members on this board...ahem).

My Mom doesn't consider herself lucky to be in a nursing home (of course), but I consider myself, my husband and our children fortunate that she's in one. Fortunate for safety reasons and fortunate for selfish reasons, too. (For fifty years my Mom kept saying, "if anything ever happens to me, whatever you do, DON'T have me live with you." She spoke from experience: my Dad's grandmother lived with us.)

She has become INCREDIBLY high-maintenance, emotional and, frankly, dangerous because of exit-seeking, wandering and touching things. I'm tickled pink there's a safe place for her.

My FIRST priority is to my immediate family who is healthy and happy. I liken it to putting your own oxygen mask first before your child's, if you're on a plane about to crash.

I love my Mom like crazy, and have nothing but fantastic memories of a wonderful lady. Still, I guess my advice would be the polar opposite to some members: if you're financially -- and emotionally -- able to get her into a reputable nursing home, then do it.

Well said Chris! I agree. People shouldn't criticize the choices others make when they have not walked a mile in their shoes. Neither my sister nor I can live with Mom - we've tried years ago before she had dementia) It was an awful experience for all of us. Mom needs our love and help, but that doesn't mean she has to live with me. Now with dementia, she doesn't even want to visit let alone spend the night with us. She wants her own apartment (which is totally impossible, her dementia is so bad she can't even work the appliances) When she was in IL, she was struggling and we did everything for her for 9 long years because she would not let anyone else in her apartment to help. So when they said she had to leave because of her Alzheimers, we moved her in a lovely AL where she is safe and cared for (although she refuses most help!) No matter where Mom has lived for the past 40 years, she has complained and been negative. Nothing makes her happy and she has never appreciated what she has. When Mom's dementia gets worse, we will have to move her to memory care unit or nursing home. Living with her, taking care of her, is not an option for either of us. My sister is full time caregiver for her husband who has brain cancer. I live in a house with three stories which is unsafe and Mom doesn't like it here, complains constantly, will not listen or cooperate. I couldn't leave her alone even for an hour because she would burn the house down or fall down the stairs. She lives totally in the minute, and gets upset if she has her daily routine changed even a little. I am happily married and we are both retired, finally able to relax and enjoy the summer spending half the time in our camper with our dogs. Mom is good where she is, lives in a small safe environment and easy routine and I visit weekly and bring her treats. Movingg her into our home would destroy our marriage and force us to completely change our lifestyle to fit hers and would not guarantee she would be better off. I love my mother, but I am a senior myself, my health is not that great, I'm not up to caring for her 24/7 so I am not going to give up what is left of my life when there are alternatives that are actually better for her and me.

Hello Babalou, I am not saying that LASTONE should do what I want. As you say " Some of us want a group of qualified professionals with supervision, oversight and accountability to the State caring for our parents. There are choices, and we are free to make them ". I was just telling about my experience and what the American way of handing these problems is. Yes, if LAST ONE decides to leave her mom at a nursing home hopefully she will be surrounded by " professionals " unlike my case where most of the " work " is done by CNA's. I think you heard about them. These are people that probably used to work at Burger King and go out there to an institute which grants them a " certificate " after " studying " for three weeks in their classroom. I went to school all my life, not three weeks. Anyhow, these are the professionals that exist in our nursing homes and what I have also noticed is that the older we get the more discrimination we will encounter around us in these places. None of us knows these because we are not there yet, but eventually we will go through the system and we will see this with our own eyes. I was just describing what happened to my family. Good luck to all.

Sorry about the typos here.

NY2015 I understand what you are saying, and it is a frightening thing and horrible what experience you went through. I have heard those things before. What you describe is especially bad in state and government facilities because they have lower hiring standards (in order to be non-discriminatory) and once hired, its hard to fire them. There is little accountability in government paid jobs anyway. I have heard privately held care facilities are a little better because they are for profit - and since they are concerned with consumer feedback and reputation they try a little harder and they don't have to retain bad employees (I'm not saying they are all that great but hopefully better than government controlled care). That is the quandry - whether we can afford a more expensive private AL or nursing home and whether our family members will move us if we don't get good care. Most of us baby boomers won't be able to afford it so we will enter the system and be forgotten and neglected because we are already seen as a burden on society. (Social security which we paid into is now called an entitlement - ha! And who has already spent our "mandated" retirement saving deducted from our salaries? - not us - the govt, so our social security never grew or was invested) To the current government seniors are expendable, resources are scarce and it believes we should make room for younger citizens and those entering our borders. With the cutbacks to what is covered for medical care and increases in our medicare and Advantagecare (and co-pays) - it doesn't sound good for us. Makes me wonder why the government mandates coverage for transexual operations but not for hearing aids (which 80% of seniors eventually need - and not being able to hear affects mental capacity and comprehension, etc)
I wonder if we will become like Belgium which has senior euthanasia laws which are becoming more and more liberal! I don't know about the rest of you, but I'm frightened that my savings will not take care of me when I am too old to take care of myself. Six years ago, when I retired I felt secure - but no longer! You are right, in this administration seniors are unimportant, as are veterans and we will not receive "the best caregivers" from our government paid workers. I know my children will not bring me into their homes in 20 years and care for me - they will still be working to keep their heads above water!

Dear CountryMouse,

Your post: " LastOne, I don't mean to add to your frustration, but can I ask about why it is important to you to care for your mother at home and whether you have considered alternative options?

You cannot make your mother happy. For a problem-solver, that is a nightmare. My huge sympathies on that point."

First, it is important to me because it is my mother. She has been my faithful friend throughout my life. I can't turn my back on her like my siblings have done. She has nobody left in this world to care for her. I can't leave that up to strangers. I had her in a rehab facility for a month before she came home to me. It was a terrible thing. I spent a minimum of 4 hours a day with her then. I wasn't terribly impressed with how they handle people and how they drug them "down" to make them manageable - and the funds they require to let her sit in a dirty diaper all day, feed her sugar and lay in a bed. I'm sorry that is not any quality of life in my opinion.

Once I got her to my house she went from a 96-year old who couldn't walk or stand to one that could and became mobile. We take her on long drives in the countryside. She isn't ignored at all - not even during the night when she has to go to the bathroom - sometimes on the hour. She isn't going to die being treated less than the lowest animal on a lackluster farm. We try to do what we can to make her happy.

I love my mother.

Respectfully,
LastOne

LastOne, I love my mother too. Well, I love the memory of her - she died two months ago, at home, where I cared for her 24/7 for two years and less intensively for considerably longer than that. I am not against people choosing to make the necessary sacrifices, you see; but where those sacrifices appear not to be working, which was part of the problem you laid out in your original post, then it seems to me to be a good idea to find out whether there might be better options.

I am sorry that your experience of rehab was a bad one (can I ask what your mother was in rehab for, by the way?). Ours was better than that, for the month my mother stayed in it for recovery from a serious stroke which left her hemiplegic; but I too concluded that on balance I could do a better job than the nursing home which was the next option on discharge - so I brought her home. But I wasn't trying to run a business. And my mother, although she had vascular dementia, was not suffering the emotional symptoms you describe in yours.

What troubles me is not the choice you are making. It's that you write as though there are only two possibilities: abandoning your mother to be treated worse than an animal by (presumably inept and heartless) strangers, or keeping her at home with you in spite of the heart-breaking distress which you cannot solve and must go through daily.

If you have done your research, visited memory care units nearby and firmly rejected all of them, then fair enough; I am only sorry that there is not better provision available to you. But that then returns you to the question of how to handle your mother so that she and you do not have to go through this very upsetting routine day after day.

Ironically enough, the answer to that lies in skilled mental health nursing with a specialist background in dementia care. People with these qualifications are generally to be found in… memory care units. Don't dismiss them. The good ones are very good indeed, offering a level of expertise and of insight into dementia that loving amateurs can't hope to acquire in the time we have at our disposal.

In the interests of balance, I just took a twenty minute break to see if some of the best practitioners I personally am aware of publish anything that could assist you, a bright and highly motivated person, with this specific area. As I'd half-suspected, there doesn't seem to be any happy medium between the very specialist post-graduate academic publications - which are mostly aimed at people working in institutions of one sort or another - and the kind of inane generalist tosh that the Alzheimer's Society puts out. I'm sorry to be so rude about such a benevolent organisation, but really! "Talk about their feelings. Keep active. Eat a healthy diet." You don't say.

Having roundly insulted them, I ought to add that their fact sheet on anxiety in dementia might be worth a glance - but frankly I'd be surprised if it tells you anything you don't already know.

The kind of techniques I have in mind were covered in a tv programme recently. The series title was 'Dementiaville', unpromisingly, but the approach was impressive. Also extremely time-consuming, requiring unrelenting engagement with the person being cared for. I'll just see if there's a précis online…

Not exactly, but there is this link -

http://www.open.edu/openlearn/whats-on/tv/dementiaville-family

- which will take you to the part of the series that focused on a person being cared for at home. I didn't see that episode, but it seems the one that is most relevant to your situation.

Anyway. I hope it's interesting, I hope it's fruitful, I hope things go well for you.

A parent who has dementia cannot always be cared for at home, especially as the disease progresses. Sometimes the most loving thing for us to do is to research and find a good facility for them. I have found that there are great places with caring staff that also have access to resources and care that I would have had difficulty finding on my own. Every situation is different. No one can, no should they, judge another. I have peace of mind knowing that my dad is well cared for despite the progressive challenges due to dementia that continues to ravage him. As I was told by a staff member at the adult day center we used for a while, I am still a caregiver, just in a different way. I see him often and continue to make decisions for him. But thankfully I have a team of support that helps me along the way. Blessings to you LastOne as you navigate these difficult waters.

I have the same problem, but, unfortunately not enough funds to get more time covered. I have recently started a business, but it isn't producing an income yet. If your job pays well, keep in mind that if the assistance doesn't need to do any skilled work, but only keep her company, perhaps you can get by paying someone less. I am sure a stay-at-home mom or a retired person would love to pick up a few bucks in exchange for companionship (and only companionship). For that matter, there could be an organization in your town that provides occasional companionship service for free. Check with your local senior center and local churches.