My husband is totally unaware of his Alzheimer’s diagnosis. He thinks he’s fine but his short-term memory is gone. He doesn’t want to eat, takes hours to do the simplest tasks, and curses at me if he thinks I’m nagging him. I have someone coming in twice a week for a few hours but my husband only wants to be with me. The shadowing is oppressive but the repetition is worse. My family lives far away and I am at my wits’ end. With the Covid quarantine, I feel trapped.

Needs to be updated with lockdown issues from Covid 19

While it's difficult to see all the similar comments and experiences, it's good to know we are not alone. And forums like this are a wonderful place to get that reassurance. Good article for sure.

And don't forget there is more specialized care for our loved ones with memory loss that's not a nursing home. It's a memory care specific care facility and they can be found in all parts of the country. These are care communities whose goal is to not just provide custodial care, but preserve quality of life for those with memory loss.
Unfortunately, memory care communities are nearly all private pay and they can be expensive, but they are well worth looking into for your loved one when that time comes.

KKaye, Yes, it is definitely time (past time) to place your mother in a nursing home with good care. Good Luck!

My doctor told me that my mother with alzheimer was going to live 10 years and I might make it for 2. She is 85, I am 67 and still working. She is going to a daycare center during the day which is great, but has a fit if she wants to stay home since she can never stay home alone again, I have to either stay home from work, or hunt a last minute sitter. She just wants to sit in her rocking chair and will do nothing else but scream at her dog. I am very tired and when my mother screams she wants to go to a nursing home, I know that one day I will try and put her in one. I feel as old as her. Right now my thoughts are that nursing homes are the way to go......it saves your sanity, it lengthens your life and even so lets you have a life. I wish the old days were back when nursing homes were in. I believe that taking care of a love one at your home creates more problems with everything....you, your family, your life in general, your job etc. But like everyone else, I am hanging in there.............

Hi, My sister is taking care of our oldest sister. My sister the caregiver. We offer to help her to get a break using a nursing home. She is wear her self out. I don't know what to do. When will she realize that thing are not going to change. Losing two sisters to one diease. What can we do.

My Mom is 97 and needs assisted living due to falling on a daily basis. She is adamant against doing anything, including at-home care. I am a physician and she won't allow me to do anything to assist her. She is now threatening to take me out of her will - I have opted to send her a certified letter ending our relationship - I can't take it anymore... I do feel relieved, for the first time in a decade...

confusionqueen, are you in the US? After all of HER money (not yours) has been used for her care, you apply for Medicaid.

Mum has no idea what day it is, which town, what currency we use, wont wear glasses, is deaf in one ear. Will use her toothbrush and toothpaste to comb her hair, wont drink water, resents my help in trying to get her washed and dressed. Doesn't remember our names. Is a misery to be around. Is bored, wants constant entertaining. Follows me around. She started at Day Care 2 months ago and loves it but when she get home, is back to being impossible. Keeps taking her clothes out the drawers and closet: packing to go to her hometown who's name she cannot remember. Problem is she could be like this for the next 10 years and we only have resources for 2 or 3. What happens when the money runs out if we place her in a memory care facility, and she is even more demented by then needing even more care? I'm drained, my health is suffering and nothing is good enough for her and she tells me she doesn't like me. She's a sweetie to strangers however. Have searched for the whole year to find affordable full time care facility but most are disgusting and the reasonable ones are way too expensive. What do regular folk do?

I am dealing with the loss of my soul mate, lover, friend, confidante - my husband has dementia. This article does not address my feelings of hopelessness about my future. I'm tired of cleaning poop and pee. Tired of being attacked when I try to give him a shower. Tired of talking to dr's who have their own agendas. I'm tired.

This helps so much the comments you made. She is such a sweet lovable person but I am going to see if there is a very good place she can go to maybe once a week,that is if she will she doesnt want me to be out of her sight.Now she wants me to sleep with her at night. Thanks

Taking care of someone with Alzheimer's is without a doubt a huge responsibility to take. I understand why many family caregivers are crying for help and just want to give up. Doing the said task will take a toll on their health eventually since this is stressful, time-consuming and demanding. But don't lose hope yet and just give up because there are ways that can help you deal with the challenges of providing care to someone with Alzheimer's.

nursebarb, of course yelling at someone with dementia is wrong (unless they are on fire, etc.) but it is almost inevitable when you are with them 24/7. Caregivers are human, too! (Speaking for myself, I know I am very human, and I've yelled when I shouldn't have.)

The real problem is the 24/7 piece, and the solution to that is some respite. You HAVE to have some time to yourself. You MUST get away sometimes. Persons with dementia reach a point where they cannot be left alone. I know that. Been there, done that. So how can you have time to yourself? How can you get away?

One service that was awesome for me was an adult day health program. The van picked my husband up in the morning and brought him home in the afternoon. Hubby had interactions with other adults, played some games, enjoyed some programs, did reading in the quiet room, and had a wholesome hot meal. The program he was in had both a "regular" program and a "memory care" program. He could even get a shower there or have nail care. I highly recommend looking into programs in your area. Even if Mom only goes one day a week that is a great time for you to recharge your batteries.

Having in-home help when my husband was no longer able to participate in the day program was also a life-saver.

If you need help with researching these kinds of services, start a new thread with your questions.

I predict that the more "me" time you get, the less you'll yell.

i would like to know if anyone who has their parent with alzheimers in their home has ever yelled at them. i feel so guilty but i had a errand i had to run and she kept wanting to go back to her room and get her purse which had to be taken away because it was such an obsession with her and i yelled at her. i would never hit her in any way but sometimes i yell and afterwards i feel so gulity but i have been stretched to the limit. She has had this horrible disease about 5 years and lives with me. I have never been away from her and I take her everywhere i go. its just mom and i 24/7. I love her so much but sometimes i yell. I know this is wrong and i dont want to do this at all.

The minute my father is too weak to resist, he's going to a nursing home. That's my promise to myself so I won't drop dead before he does. I want my time, life and health back.

Dean, call Social Services in your county and ask for a needs assessment. The social worker who comes out will know of resources in your area. If Grandma will be best served by being in a nursing home, the social worker can help you figure out how to pay for it, and if that means Medicaid, can help you get started on the application.

You have given your grandmother four years of staying in her home, which she couldn't have done without you. That is a fantastic gift and you can be proud. Now it is time to come up with another solution.

hay Guys, I need some Advice. Im 22 and taking care of my 86 grandmother who is suffering from Alzheimer's for the last 4 years. Its gotten near Impossible the last few wks and feel Like i am not coping too well. We dont have a family that supports us its just really me and her. I have a carer to come in and do her Personal care but she doesnt like strangers so most days Im doing that too. My Question is if I do feel like I cant cope Where do I go ! Like I mean Shes turning against and can be quiet aggressive towards me, its been 4 yrs Ive nothing left in me. I really feel she needs 24 hour care soon or im going to have a breakdown.

I am pretty sure that most caregivers know and agree with what is said in this article. But to actually follow thru with the advice is another story. My husband has Early Onset Alzheimer's Disease and I cared for him for about 5 years at home. Been thru the wandering, getting lost for up to 6 hours at a time, and this is with good care, forgettfulness, endless questions, and much more that Alzheimers decides to bestow on the patient. It was not that bad,,,,, so I thought. It has finally taken its toll on me. I could not stop crying, I was tired, I hurt, all the while trying to keep up a happy front. I was not doing anyone any favors by doing this. My husband and I are 56. I decided to place him after my Hospice Chaplan assured me it was not copping out on my husband who I have been with for 38 years. Since making this decision to place him, I have felt no guilt. He is happy,,,, they call him Smiley,,,,, He is not verbal anymore but his smile and beautiful eyes light up the room. He has come out of his shell and bloomed thru this disease. He knows no one but loves everyone. He is adjusting. I am a Christian and have given this to God. He gives me peace over my decision and both me and my husband are benifiting from my decision. I am a much better person and caregiver. I did not desert my husband nor turn over the care to others. We all co-caregive and it helps all of us. Just like nursing home personnel,,,, we at home caregivers need time off. They work 8 hours on and the rest off. Who are we to think we can do 24/7 and be the best we can be. We can keep it up for a while but then it is time to give the reins to someone else and just be able to enjoy the time you are spending with your loved one. This article is a very realistic, important article that really centers on the ability of the caregiver to be the best they can be and give the best they can whether it is in the home or out of the home. Please who ever reads this take heed,,,,,, they are correct in their advice.....

Knownunknowns, it sounds like you have done an excellent job of enabling your mother to retain her independence as long as humanly possible. Congratulations! Job well done! But now you've reached a point where continued independence is not possible. That is very sad. Have the other caregiving situations involved dementia? That puts a whole different spin on things, doesn't it?

Even if Mother is not willing/able to participate in the role reversal, it has happened. You are the caregiver; she is the dependent. Just as she wouldn't have allowed you to play in the street just because you insisted that is what you wanted to do, you can't allow her to continue to live alone. But that analogy is easier to say than to apply, I'm afraid. When the dependent weighs as much as you do, has a strong will, and you want to avoid physical force at all costs, it is not as easy as picking up a screaming child and carrying her into the house.

Perhaps it is time to bring in an outsider for reinforcement. Do you have a case manager or social worker involved at all? Someone who can objectively assess the situation and say, these steps are necessary for your safety, Mrs. Mother?

I use elder day services (the van just picked my husband up) and agree with Styg53 about the benefits. Perhaps you can try that again. Take Mother rather than using the bus service, at least for several times.

Good luck to you on this difficult leg of the journey.

Wow, knownunknowns----You are facing a really difficult crossroads in your mother's journey and yours. You've gone above and beyond on adapting her home for her independent living. Her care is clearly progressing into needing someone to keep an eye on her and to assist her with the basics all the time.

As a progression to full time care, have you used elder day care? The reason I ask is that my sister and I started using this service over a year ago. There are days Mom doesn't want to stay but one of the staff will distract her so we can leave. Then there are those days when we pick her up that she doesn't want to come home with us. And again, a staff person will assist us in getting her on her feet.

We use elder day care almost five days a week for about six hours a day. And once a month we use over-night respite care (at another facility) for two to five days. This gives us a much needed break. And these service are beginning to acclimate her to eventual full time, "nursing home" or healthcare center living.

The key for us is that she has connected with different staff at both of our facilities that we have used for over a year. She needs to feel safe, supported, and cared for and shopping for the best facilities makes your job a whole lot easier when dropping her off for care.

This may not help at all. . . if this info doesn't resonate for you, let it go. This just may be me needing to process where I am with my mom.

God bless you. . . and as I mentioned earlier in another post, taking care of you is vital to this whole process. If this isn't happening, you're already at a huge deficit.

Again, God bless!

I have been caregiving for my family for 26 years. Currently I am caring for the last member of our family, my Mother, who has had Alzheimer Disease for about 10 years. Her disease is progressing faster now and she has lost the ability to use common sense, losing appetite, refuses to have any one stay with her in her home 24/7. She is not willing to transition into assisted living in a AD facility. She resents me trying to do what is right for her and isn't willing to participate in role reversal of the mother daughter relationship. She accuses me of lying about conditions I correct in the home. I am worried about her safety. She has lost the ability to operate the washing machine, dish washer, central air conditioning any modern conveniences. But is steadfast about being in charge of her home. It is a battle I am tired of fighting in the war to cargive for her.

I have tried the free day care offered by the states council on aging. She wouldn't go unless I accompanied her for her first visit, but has refused to return on her own. They even have a bus that picks the patients up at their home for half a day.

I have evolved with the progression of the disease and adapted her living arrangements until there is nothing left to change so she can be independent. She has an automatic timed pilled dispenser with an alarm for her four doses each day that I prepare weekly. I have purchased an EMS bracelet that she wears all the time so she can be located if she wonders off and it is monitored 24/7.

I have reached the end of my rope. She refuses to wear her glasses so she can see, will not put a sweater on when she is cold. Accuses me of lying about her to put her away. Whatever that means. I am the only sibling that lives locally. Everyone else lives a considerable distance from her home.

What do I do when she gets to the point she needs 24/7 care and will not allow anyone to stay in her home and refuses to willing move to assisted living?

thanks carol,last statement in your article really hit home for me,it's time,I know it now I have to apply it.

Severe dementia and especially Alzheimer's Disease is a tsunami that the USA is just beginning to get a glimpse of right now. When this hits with full force, wow! Because the disease is so long term, emotional, mental, physical, familial, spiritual, every aspect of our humanity is called to the forefront to sometimes just survive the awful long term effects of this disease. Care for the caregivers is the utmost importance. I can't emphasize this enough. My sister and I are doing this, for now, and it's the hardest thing I've ever done in my life.

The closest job to this one, if one chooses to care for a family member 24/7, is a soldier on the battle field in a fox hole. Stress management, self care, in every aspect is so vitally important, that I can't emphasize this enough.

And never for a moment, a nanosecond, feel guilty about getting support with in home care, respite care, elder day care. We are using all of these and we're still barely surviving.

I would suggest reading don Miguel Ruiz's book "The Four Agreements". You will find these provide you with emotional and spiritual survival skills you will need. Really! God bless all of you attempting to care for someone with Alzheimer's. God bless you deeply.

Carol, as adults I do think we have the right to change our minds even when it comes to promising someone we would never put them in a nursing home because when you reach the point where such care gets over your head, you almost must change your mind about your promise or through yourself, marriage if married, job, etc. all under the bus.

Wow we are dealing with this right now she has alzheimers dementia and severe alcoholism and prescription drug prob. she's bipolare and manic depressive as well.....Not good combo we had the hardest time getting anyone to diagnose she would fall and hurt herself and the hosp. would send her to nursing home for rehab. but would always send her home even tho we would beg them to keep her she was a danger to herself......It took us right at a year to get all her med records together request it all.....Dr.'s ~ Rehab facilities~ home health care staff if she had them~testimony from anyone in family or neighbors that have experienced her issues first hand~and cover your butt if you are primary care person for her~ My mother in law when we finally found her assisted living place beautiful too she flipped out and called the police and adult protective services and told them we were going to take her against her will there and dump her and we wouldn't give her her debit card and check book and we stole her car......we would of never done such a thing~Adult Protective Service if they are ever called will stalk you and make you miserable....My advice is to document and copy everything and I mean everything keep reciepts if you spend any of her money paying bills or running errands for her......I accumulated 2 3 ring binders of information from her home and put them in clear protective paper covers in date order.....then have her put in hospital for her meds to be evaluated.....It took me forever but it only takes one person to really listen to YOU beg them to listen to you or look at your documentation of her actions from leaving stove on ~ (she opened the back door to let dogs out and never shut it in winter and got very cold yet she forgot she had a heater and turned on all the burners one which she was boiling eggs she fell asleep and was woke up to exploding eggs all over ceiling) If she has ever fallen or gone somewhere and forgot where she was.....or keep all stuff from home health care providers talk to anyone that deals with her personally on day to day basis or anyone whom has concerns.....you will eventually find the one person to listen or read the documentation ~NOTE if they try to send them home again....and they will you can refuse to pick her up tell them she is not safe and noone can watch her 24/7 and she needs 24/7 they have NO CHOICE but to place her in a long term facility....like my mother in law ~ found a sweet lady at the hospiital FINALLY by the grace of GOD pulled all her doctors together and they consulted one another and all agreed she needed long term care where she now safely resides permanently at the VA Hospital. It's for her own good and yours as well you may even contact Adult protective service with your info and see if they can help it's better they get a call from you than her making it sound like you are mean to her or you take her money or you are neglagent or don't care.....Trust me this was the hardest thing we have ever done it's ...well very trying...I know she has rights and she will tell you that but so do you I live in very small Elephant Butte NM where it was easy to get all DR together I hope and wish you the best of luck....right when you think you can't take it another minute you will find that one angel of a person who really feels your story and it willl work out it will.....Good luck...pray pray pray...I will be okay

Carol----Great article. My sister and I are caring for our mother, for now. We would have died long ago if not for elder day care at a local nursing home. And our life saver is respite care for two or three days at a time to give us substantial breaks.

I am so grateful for qualified, caring people who feel called to elder care and especially Alzheimer's people. These support professionals have saved our lives.

---Sandy

This is a good article, however you left out another care option; Adult Day Services. Adult Day programs allow your loved one to spend the day in a safe enviroment while enjoying socialization and planned activities. Some of the programs offer health monitoring. To find out more information about adult day service programs go to the National Adult Day Services Association website to find out more information. Many times, an adult day service program is the most affordable option in long term care.

Thank you Carol for this great article. I appreciate it and I'm sure I speak for many.