I am having such a hard time caring for mother. What's the best course of action?

The dementia will progress to the point that she will think she is fine, MOST of the time. My mom ten years after diagnosis would still get terribly upset those infrequent times when she knew something was wrong. And she would get very upset with reality often, like when I would tell her the man sitting with her on the couch is her husband, or that I am her daughter. There were times when she thought I was lying to her about who I am, and wanted me to leave. There were many times she wanted her husband to go home. There were times when she thought her husband's daughter was his girlfriend. And the time that she got so angry with him because he had this daughter and it sure wasn't mom's daughter so he must have had an affair. They got married when mom was 80. She was diagnosed soon after.

So, the things your mom gets upset about will change as the dementia progresses. I, personally, do not think there is any such thing as happily demented 100% of the time. There will always be things that are nor part of HER reality that will have her in tears, angry, fruatrated, you name it.

Sorry for your troubles - this is an agonizing time and there is no perfect solution - after years of being my mom's caregiver I placed her in a memory care facility 4 months ago - while I have some relief from the stress of direct care the situation is no easier and is now costing thousands of dollars a mnth - she is scared to death in the facility due to the other residents - I want to bring her home but she hates having caregivers in the house (hence the move to a facility)

If you can afford to hire help at home then do so - you may find you will need to try several out before finding the right one - agencies can run about $20/hour with a 20 hour / week min. If you hire on your own then you will need to cover social security taxes and workers comp insurance

Are you the sole caregiver for your mom?

Make sure she does not have urinary infections first.These often look exactly like dementia.

You may try the "white lie" approach. Arrange to have her admitted to a care facility and say the "doctor" has "ordered" that she be thoroughly examined and observed for a week or so...the "week" will never end, of course. Of course, finances are a likely major problem. Perhaps she will be eligible for Medicaid.

Grace + Peace,
Bob

You situation sounds so similar to mine. My mom showed signs off and on for maybe 2 years before we told her she couldn't live by herself anymore. She moved in with me and my now 21 year old daughter. We didn't have to do that much at first, but over those 5 years as each week went on, it became more and more we had to do for her. She would sometimes go for the weekend at my brother and sister's houses but she would be mean before she left saying she didn't want to go. Last Thanksgiving she had 3 falls in one week and I had to tell my brother and sister they would have to get her every weekend or I was going to have a breakdown. This started and I also was blessed to find a wonderful lady who would come into the house and stay with her while I was at work. So she was at my house Sunday through Friday night and my siblings would have her Friday night through Sunday mid day. It did help because I was able to at least breath for a little bit on the weekends. It's so hard taking care of an adult. I never knew how hard until going through this. My mother too was confused about what was happening to her. I tried to explain it the best I could and would always tell her not to worry because we were going to take care of her. We were moving closer to having to make a decision of nursing home about 2 weeks before she passed away. She decided to stop eating, taking meds and was in inpatient hospice for about a week and a half and then went home to be with Jesus. I know God won't put more on you than you can bear, I'm a living testimony for that. As hard as it was, he was always there for me and I don't regret the time I had with my mother. I will pray for you that you can find some good answers for your situation. I hope you have family that can help you and you can also look into respite care that could give you a much needed break.

A stay in a Geri-psyc ward in a hospital to find a medication that will calm her without doping her up may be a solution. My friend's health insurance paid for this when she became uncooperative with her care. It won't clear up the confusion, but will make her easier to manage. And the stay there gives you some respite. For my friend, it took 3 1/2 weeks to find the right combination of drugs. During that time her husband's birthday and their wedding anniversary came and I made sure they were together for a while on those days. She had no idea of these things anymore and the husband no longer remembered them either, but they enjoyed those times when I explained why we were doing this.

I agree with all of the above, especially the "white lie" and the geri-psych ward.

This hard--so you have to get tough and do what might have seemed unthinkable a while ago. You have to be the grown-up.

Your have a lot going on here but I want to address at least one issue. Caregiver Burn Out is very real and should be given more weight into your decisions. You are to no good to your mother or yourself if you are trying to do to much. A one on one, for a total care patient is unreasonable. We see it all the time but it does not make it right.

Finances permitting, the first thing is getting an aide to come in for at least 3 hours per day. Have them do all the morning care and breakfast. You leave the house for some "me time". Recharge your batteries.

Above all should not look at going into a skilled home for care as failure or neglect on your part. At this point your mother has reached the point I believe you are asking about. You just may not see it. The fact she does not know who you are is rather telling.

One other thing. We speak of the here and now, but remember it only gets worse.

I am sorry if I sound to clinical, but as a home nurse I have seen this over and over and it is my best advice.

Turnerjbbs - I can relate very well to what you are experiencing. I also started having memory problems while taking care of my mother who was already difficult before she got Alzheimers. It terrified me to think I might have it too. I got checked out and found that the memory problems were due to the constant stress of caregiving. I took care of mom for 4 1/2 years in my home. She began falling. She is pretty big and neither my husband or I could get her up without hurting ourselves, so we found assisted living for her. The first 6 months of that were very stressful as it was not as good a facility as we were lead to believe but we found a much better one that was $800 a month cheaper, her cost of care never changes and they have been great. She has been there for 6 months now. During that time, I have been able to recover enough from the stress that I have made a lot of progress with setting boundaries, etc and my memory is improving as is my overall health. Improvement is ongoing. I have had to limit my visits to once a week but she is actually doing better as well in terms of being more willing to socialize, which helps her in general. I hope this helps you.

I am in a similar situation, except I have only been my moms sole caregiver for six weeks. I have been with her 24/7 except for brief periods when she accepted the caregiver thinking she was a "friend"
In this short time, despite tremendous guilt, I have come to the conclusion that I can't continue to put my entire life on hold for her. I've got two teens still at home, and a husband who are all taking a back seat...never mind me. Never mind having friends over, or going out to dinner with my husband, or sleeping in, or going to visit other family out of town or taking my daughter to the golf course, or going to work...etc etc.etc.

I am going to place my Mom, "doctors orders" for some "memory therapy" into a local memory care place five minutes down the road and cross my fingers she adjusts.

If she realized how I have put my entire life on hold, I don't think she'd want me to continue.

Somehow I will have to deal with the guilt....

It's difficult to fix something that is as broken as her mind is, just go with her thinking, it will help her and you to be peaceful..also try changing the subject..hope this helps some.

You are not mean. You are human. We all lose patience. It sounds as though your mom's dementia is progressing. You have to have help for her. Even a high school senior could come in for a few hours a day and be with her.

1. As someone referenced above, your memory problems are probably do mainly to the stress of caregiving. I have so much on my mind that I often misplace, forget, etc. I know it's not Alzheimer's - just too much on the mind. I try and be carefully, especially physically - not rushing, watching where I walk, etc., so I don't trip and create more problems.

2. I also agree that home care is the ideal. Unless your mom is totally off the wall, there is no reason she can't stay in the home setting assuming you have the funds. Putting your mom in memory care - or wherever - is fine, but just keep in mind that you will still be doing the "managing," getting the phone calls, and wondering and perhaps worrying about whether she is being cared for properly.

Best wishes. Hang in there.

A good middle ground between home and nursing home is "respite care." Respite care is available at most nursing homes and it is covered by insurance. Respite is when you place your loved one in a nursing home for anywhere from 3 to 30 days so that you can get some respite. During that time, the nursing home takes care of everything meals, meds, showers, etc. I would recommend you do the full 30 days, no matter how hard that might seem at first. spend the first week sleeping and taking care of yourself. You have to have some recovery time. This will give both you and your mom a chance to see what it's like without committing. If you're not feeling it, at any time, go pick her up and end the respite early. You're not locked in. Your mom may find that she has made friends and that she likes the activities and the staff. You may find that this is really a better solution for both of you. If that's the case, the nursing home will help you transition her stay to long term. If that's not the case, you will have had time to look into other solutions.

Whenever I read questions like this one, I want to ask the caregiver: 'you are giving up your life, your health, and your sanity to keep your loved one at home. Your loved one doesn't know people any more (maybe including you), doesn't recognize their house any more, is wearing a diaper, can't go out shopping/socializing/gardening unless it's with YOU. They babble and throw fits and act strange, still 'running the show' through sheer force of habit! It is up to YOU to find a solution so you can get your life and health back, and if that includes a nursing home, so be it. (They'll adjust. They can sit in their room and watch TV just like they have been doing in their house, or they may find socializing with other people is more fun. Living in their own houses - that time is over.) Even if they don't like it there, there's nothing you can do about it, they don't like it in their own houses either..... And what if YOU die or keel over from stress or a heart attack? You would be dead or disabled and they will end up in a nursing home anyway....If you or mother has some money, definitely definitely have someone come in at least in the mornings, that will give you a small break. It took the dear lady who came in for my mother a good hour to get her up, cleaned up, changed and dressed for the day. I simply couldn't have done that, I lived miles away and had a ton of other things to do, and the stress nearly killed me toward the end.

Great advice and experience here. My experience is with my own memory issues. I even went to a neurologist who cares for alzheimer's. He told me and my doctor he saw no alzheimers, but 1- I had low grade depression (burnout from caring for my aunt), 2- meds that interact and cause memory issues, and 3- sleep problems with my equipment for sleep apnea. All 3 needed some work and making time for me.
On another note, my Dad in his final days was in a nursing home, and would suddenly jump from being sweet although not knowing us, to recognizing Mom and getting nasty, accusing her of dumping him there for another man. Her comment to me as we left was, 'he's sick and doesn't know what he's saying.' By then she had respite and was doing better. Good luck. You are a caring person in an impossible situation.

It took me a long time to get there, but I finally realized that my mother was not going to be happy no matter where she lived. The only thing that would make her happy would be if I could make her 40 years younger and bring dad back. I moved her from independent living where she was needing increasing amounts of help, to assisted living, to a different assisted living (when the first one wasn't a good fit), and then to a memory care wing about three months ago. She is safe, fed and clean. I am able to work, spend time with my granddaughters and freely run errands. There are still things to do for her and some stress, but it is not 24/7. I had to take away her phone when she began calling me dozens of times each day to complain, started calling other relatives at all hours and then just dialed random numbers. She wasn't happy about losing her phone either, but it had to be done. Her medical providers have adjusted her meds to help keep her calm. I agree with Lassie. If they are going to be unhappy no matter what you do, you may as well take care of yourself.

When I read your post, I could so relate to it...I care for my 93 year old mom though we have only been dealing with dementia and other health issues for about 3 years. I hope you cn find a solution that works for you and your mom - you need to take care of yourself...not easy when you are taking care of someone else...I too felt I was making mistakes, becoming increasingly forgetful but most of it seems to stem from stress and lack of sleep. I am fortunate to have a brother who helps me a great deal. You did not mention help from family in your post so perhaps that is not an option. I would seriously consider getting some help in the house even occasionally just to give you a break. Check with local agencies, ask around and see if you can try some who would be able to watch your mom/take care of her needs even if it is only for an occasional morning or afternoon to give yourself a break. Dementia is progressive but there are some days easier than others...and some days much more difficult...take care of yourself and all the best from a fellow caretaker.

Is your mother under the care of a neurologist who understand frontal lobe dementia? There can be relief with a very light dose of a medication if appropriate.

Five years? BREAK TIME! I had my dad in my home 24/7 for 4 1/2 years and drove three hours once a month to help out, staying for a week at a time. He was placed in residential care six months ago as he broke my spirit, I began having health issues along with mental duress. A friend once told me me there is the nice Alzheimer's and the mean Alzheimer's, I got the latter. And the battle continues (and yes, it does get worse!) as I still take him to doctor's appointments, take care of his meds and financial needs. Your mother is scared, she is aware that her mind and body are going through rough changes. While she is going through this, she is taking you along for the ride. It is hard to not lose your patience and get frustrated, like Malachy2 says, "You are human." That being said you, me and all the rest of us in caregiver land have our own needs, and they need to be attended before you do burnout. I did. Try getting your mom into adult day care a couple or three times a week, get someone to come in, there are a lot of resources, get in touch with your county ombudsman. Joining a support group is another help for you, like this website. We want you to enjoy and thrive in your life. I really thought I wouldn't crash and burn, but I did, and the guilt eats away at me every time I see him. My family thinks he is fine mentally, but that I have become the sick one. They do not call or see him. We are rooting for you!!

I thought it was curious the way you said that God forbid you place your mom in a long term care facility. I wonder if you have visited any places lately. There are many very fine places where dementia patients can live and are taken care of by competent and caring staff. For many families it's a Godsend and not a failure on their part.

I'm not sure how old you are, but most caregivers that I see in Memory Care facilities are under age 40. And there are shifts of people there to provide care. I think the job is quite mentally and physically demanding.

I would imagine that you are doing quite a bit for your mom and you admit that you often lose your patience. I think most would when they are overwhelmed. It's no wonder your memory is not good. I think I might have mom assessed to see what level of care she needs, keeping in mind her progression that will continue. Can you get help to come into the home?

While your mom's condition may challenge your patience, it's really quite common for people with dementia to be that way. And it could get more demanding. My cousin used to repeat things over and over. She also paced and hid things. It was quite challenging, but she progressed to other things, like double incontinence, can't walk, limited grasp with hands, etc. I would examine how you will handle your mom's eventual progression by yourself in the home. There is a lot to consider. It's not just the physical demands, but the mental.

If you think your mom's fear is causing her undue anxiety, I would discuss it with her doctor. Many dementia patients take meds for anxiety and depression. Not the meds that keep you drowsy. They can bring much relief to the patient, as I saw that with my cousin. She is not always content, but she is most of the time. She has good things to say about the staff at her Memory Care unit. I suppose at some point she will no longer be verbal. There are people who are like that in that unit. I hope you find the answers you are seeking.

I would like to point out that if you do place your mom in a facility, you may visit as often as yo want, but have the opportunity to restore your reserves by going home each night. I now look forward to seeing my cousin. My mind is clearer and I can get adequate rest. Even if you stay with her in your home, I would get respite care and outside help to help you with her care.

In my experience, keeping elderly parents at home is not necessarily the 'kind' thing to do! For some reason, many of us feel 'guilty' for placing a loved one in an ALF or LTC facility, but it's a good idea to ask yourself a few questions before allowing that guilt to take over:
1. Is it safe for your loved one in your home. Can you bathe them & assist with showers and personal hygiene?
2. Are there a whole bunch of activities in your home to keep them busy, occupied, socialized & amused?
3. Are you home to cook 3 hot meals a day?
4. Are you able to administer various medications at various times of day?
5. Are you able to order prescription medicines and manage that whole mess?

If your loved one were to fall, as happens quite frequently, are you equipped to take vital signs and determine whether they need hospital care or not?

The list goes on and on. My father fell & broke his hip about 2 years ago. I had no other choice but to place both of my folks into an ALF so they could be properly cared for, and I stress the word 'properly.' I am not strong enough to help a 170 lb man to the bathroom, nor would he want me to. I was managing my mother's 12 prescriptions, which turned into a part-time job. Not to mention, I couldn't be sure SHE was taking them properly. My dad passed away last June, and my mother probably would prefer to be living with me, but she's been at the ALF the entire time. When I start feeling guilty, I remind myself that I cannot administer the kind of care over HERE that they are administering over THERE. Nor can I provide entertainment and socialization with other widowed women who all use walkers & tell the same story over & over again all day long. :)

My mother (89) has been going down the dementia road for a few years now, and it's gotten pretty bad lately. She's fallen down at least 5x while at the ALF, and each time, the staff rushed in to assess her. I hired a geriatric doctor who's in the ALF every Tuesday, and her NP is there on Thursdays. When mom came down with pneumonia, she was diagnosed immediately, put on antibiotics immediately, and thereby avoided hospitalization & recuperated in one week, which is truly a miracle. She's now signed up for the spa program, and is assisted with a luxurious spa bath once a week. I have a bathtub in my house that would be impossible for her to get into, never mind out of. The shower in the ALF is specially equipped for handicapped usage, and once she's wheelchair bound (which isn't all that far off), the staff can wheel her right into the stall. I can't do that.

In fact, I can't do 90% of what they can do for her. And so, I leave it to others who are qualified. I am in constant contact with the staff and the doctor at the ALF, and when I see her enjoying her time, I slap myself in the head for ever feeling guilty.

When the time comes for her to move into memory care, it's right across the parking lot.

I really think caregivers need to stop the torment, and do what's right for ALL concerned. If you can't afford a private ALF, then Medicaid can kick in. There are now lots of 'private homes' that have been turned into ALFs, and only take like 6 residents (and many are Medicaid approved). Every resident has their own bedroom, and they all eat meals together in the dining room every day. They keep one another company, and that allays many fears at the same time it keeps them occupied & social.

Best of luck to you on your journey to finding the right answer. I just hope you don't allow misplaced guilt to drive your decision.

Thank you, Lealonnie1. That was exhaustive and well said!

Sue

I know just how you feel. I have been taking care of my mother exactly one year today. It has not been a good situation for either of us. She has never cared for me and wantedone of her son's to care for her but none of them wants the responsibility. So im in the process of getting medicaid and medicare combined with her social security to pay for long term care. And i dont feel guilty. It was a mistake in the first place but i did the right thing and have been treated terribly by her and received no help from my brother's. So heres my advice put her in a long term care facility and get on with your life.

I feel bad that so many respondents have recommended facility care. I just keep going back to the phrasing from your original question: "My Mother is scared. She asks me over and over what is wrong with her. She is aware that her mind is not working correctly." I didn't pick up anything from your original post that your mom was violent, aggressive, obnoxious. I totally support your need to get help so you're not carrying the load you've been carrying, but I would personally encourage you to bring in outside resources to help and try and keep your mom in her familiar environment. Given what you've described I think she would prefer her comfortable environment to a "spa bath" and hanging out with other people who repeat themselves. When/if her dementia progresses to the point where no one can handle her in a home environment, then, yes, facility care is the right choice. Bottom line - go with your gut. Ultimately you have to be comfortable with the final decision.

When people who are all in the same boat congregate together, they share themselves, their pain, and their stories. Coming together for a common cause isn't about 'spa baths'.......it's about easing fears & feeling close to other women going thru the same thing. Home care may be fine for some, and facility care is fine for others. My point was to take the guilt out of the equation, and to do what feels right for the parent, making safety a top priority. In memory care ALFs, special care is taken to handle the residents with empathy, proper medical supervision, and activities specifically designed for them. They are not the horrible institutions some may think. My mother has been petrified her whole life
and never felt 'safe' anywhere, even when my dad was alive. This is the first time EVER she doesn't lock the door to her apartment, and feels safe & secure.

As others have said above, Caregiver burnout is real. Five years is a long time, could you imagine doing what you're doing for another year, another five, or even another ten?

For the short term, have you contacted the Senior Services office for your state and county? With a few calls (and help from my dad's doctors), we were able to get several hours of in-home care a week. It started as just companion visits for my dad (so that my mom, his primary caregiver) could get out of the house a few hours a day) and evolved into assistance with bathing, eating, etc. Ultimately, we ended up having to pay for full time care at home and more recently moved dad into a nursing home, but we benefited from many local senior and social services and little to no cost for many years. Hopefully you can find some help for yourself.

Remember the directions they give you on an airplane:
"Please put on your own oxygen mask before assisting others".

I am a burned out caregiver of my adult special needs daughter, I too am struggling with out of home placement..it's so sad for me..to let her go..worst/hardest decision I have ever made in my life, I'm in my 70's and very tired/stressed..I have memory issues ans stress makes it worse..I cry a lot..

Hi Turnjbbs,
I totally understand how you're feeling. My sister and I take turns caring for mom in her home and we have a provider that comes in 5 days a week to help with house shores and just keep mom company. We remind mom everyday how much we love her and that we'll never let anything happen to her. What else can we do. We applied for the provider services through the Texas Department of Aging and Diability Service. Mom qualified because her monthly social security is under $1k a month. Of course, there are other criterias that apply. You should check and see if this agency in your area can help you in the meantime. Our plan is once mom gets to the stage where she doesn't recognize who we are, we'll find a memory care facility that has Medicaid beds (another qualifier) for her safety. It's not going to be easy but we can only do the best we can with what we have at hand. My mother is 84, and unfortunately did not plan well for long term care but then who does. We have to learn from these challenges and make sure we're not a burden to any of our own. Please keep us updated on your status. God Bless you and stay strong.

I have to stay really, really focused on what I am doing. Then I am ok.

The minute I start thinking : HOW LONG???? I am done for. My mood spirals and I get depressed. So, I don't do it.

I have been working with/caring for my mom (90) and my husband (82) for five years. When someone tells me that their parent lived til 99 or, as with a friend's mother, 106 (!), I get sick to my stomach.

So, my rule is stay focused...keep the blinders on.