I can't continue to care for my Mom in her home, What do I do?

I was feeling just like you. My mother had lived with us over a year, before I started using respite care. I decided to try that out first to make sure I could deal with dropping mom off somewhere. The first time was for 1 week, I was sick to my stomach. I knew I needed a break, but couldn't stand the thought of someone else taking care of her. We have been doing this since October of 2013. In fact, she is at respite care right now (we pick her up on Sat.). We have already set up 2 weeks for April and May. My husband and I are starting to discuss moving her full time. I think I'm emotionally ready. I'm an only child, and so was my mom...so there isn't anyone else to help out. I found myself starting to snap at mom, and that wasn't fair to either one of us. If you are looking into assisted living, I don't think there is anything you really need to do except find a place that has an empty room. I'm in Florida, and had talked to her Doctor. He said that you don't need a Doctor's order for assisted living...although the assisted living facility will want the Doctor to fill out some paperwork regarding her medications, and what she is capable of doing physically (her ADL's like dressing, taking herself to the bathroom, etc). I used to think that I would never consider moving my mother into a facility. She moved in with us after a shoulder surgery. She has slowly went down hill mentally, and physically. She still walks (with a walker), feeds herself (if someone else makes the food), and takes herself to the bathroom...I think this is why I felt so guilty thinking of putting her somewhere. I can handle her physically (she needs some help with bathing), but mentally, all she does is complain..daily...about everything. I got to where I couldn't take it anymore. Respite care helps me to clear my head. I know when she comes back on Sat, we will be back in the routine for a couple of weeks. Bloodwork on Monday, Pain Management Dr. on Tues..I have a paper due next week (back in college)..then the next week she sees her regular Dr...(which is in Lake Placid, FL..over an hour from where we live-I keep catering to her craziness)..and she sees her eye Dr. (she had cataract surgery a couple of weeks ago. BUT....with all this going on..I have in the back of my mind that on April 16th..she will be dropped off again, and I will come home to a quiet home that I can enjoy with my husband. Do what you have to, to save your sanity. Start with baby steps....I know it is so hard when you thought you would never think of putting her somewhere. Sadly, we never know what we are initially in for, and we don't know how quickly their health will decline. I wish the best for you. Start searching the internet today to find a few places to look at...I called a few when I found our place...we went to each one to see the staff in action and to check out the cleanliness. They e-mail me reports throughout the week, and mom has a cell phone that she take with her..so she is in constant contact with the outside world. My only real problem is that she hates other people..so she stays in her room. They charge an extra 3.00 per meal to bring her food to her...and you know what...I consider it money well spent to give myself a break. Keep us all posted on how things go. Good Luck!!!

Dear Holy, whatever promises you made to your mother were made before there were rules that facilities had to follow. You need to talk to your mom's doc about what level of care she needs. Then you call facilities of that descroption and they evaluate whether they can handle her needs. It sounds like perhaps she needs a memory care al setting. This disease is best hsndled by professionals, not us mere mortals. We sent our kids to school to beceducated, didn't we?

HC, don't worry about feeling guilty just yet. Do what you need to do, and we'll all help you through the aftermath feelings as they occur.

I can't remember anything about your mom's finances. Will she be self-pay, at least initially, or will she need financial aid to be in a care center? That can make a little difference in how you proceed.

Your number one priority at this point should be what is best for your mother AND you. Having your relationship deteriorating to resentment and snapping is NOT best for either of you. Finding a great place where her physical needs will be met and where you can visit often as a loving daughter sounds to be in both your best interests.

Start the search. When you find a potential place, discuss your mother's skills and needs with the admissions staff.

My sisters and I just placed our mother. I sounds like she is at a level similar to your mother. She would do OK in assisted living EXCEPT for her dementia and mobility issues, with which she'd need a lot of assistance. We found a dementia-care place that seemed suitable, but they didn't have an opening. She has not dementia-related behavior problems (no wandering, no hallucinations, no verbal outbursts, etc.) and that environment might be overkill for what she needs. She is now in a Nursing Home and so far seems to be settling in well.

For most dementia patients a time comes when they need the protection of round-the-clock staff, and a structured environment geared to keeping them calm and happy. I think your mother's time has come, don't you?

BrendaLynn: What kind of Respite care do you have? I have never heard of Respite care in California where you can drop off someone for a week. It sounds like heaven but I was surprised when I read your reply. Doesn't leaving then coming home like this confuse or upset your Mom? I don't know how my mother would handle that. Well I do know she would fight tooth and nail not wanting to go as she never leaves the house. Is this covered by insurance or do you have to pay for it yourself?

ba8alou: Last September when Mom was hospitalized her doctor told me to put her into a nursing home right then. She was really out of it because they had filled her with all types of drugs to stop the sundowing and all they did was make her worse or hallucinate. She is a bit "ODD" in that medications that normally work on people for this disease do NOT work on her. We are now on Ativan .75mg split into 3 doses morning, noon and night and Ambian 2.5mg. Her body is amazing that she just overrides everything. The Ativan she takes would knock me on my backside but she powers right through it, I am sure the Ambian would too, but she takes it, is awake for about 2 1/2 hours then goes to sleep and is up around 6 am!

jeannegibbs: Mom's finances are such that she could pay for a short while and then it would be necessary for insurance to be able to pay for her. This is one of the reasons I am wondering where she would even be able to go. I just know that I am becoming so broken by all of this that if I don't find something and put her somewhere or figure out Respite, or Day Care or Something, I am going to break and I am going to be good for no one!

Mom can be okay, she can be nice and quiet and sit outside and watch the birds but the constant asking the same questions over and over and getting mad at me and saying horrible things and then I get mad when I can take it no more and will say things back....I HATE IT AND I HATE MYSELF! This is not how I want to remember my last days with my Mom, I do not want to resent her but I do and I resent my sister as well for not helping me. I feel like after 8 years of doing this just falling on the floor and yelling "I GIVE, I GIVE, I CAN'T DO THIS ANYMORE!"

You said, "For most dementia patients a time comes when they need the protection of round-the-clock staff, and a structured environment geared to keeping them calm and happy. I think your mother's time has come, don't you?"
Even if HER TIME has not come, MINE HAS. I am so exhausted, and I honest to God want a life again!!! I need a vacation, I need to be able to run to the store, go and get my hair cut, eat lunch with my daughter, I need to be alive again....even if all I want to do is sleep until 8. With my panic and anxiety beginning again I know I cannot let this get the best of me or I will not be able to do the things I need to do...I don't want to wind up in a facility sitting next to Mom!!!!

You are so lucky to have your sisters help you with your Mom. Mine just look at me and ask "so what are YOU going to do?" That is IF they bother to ask.

HC, I suggest you apply for Medicaid for your mother, and look for places that accept Medicaid payments. In this state that would include some assisted living facilities, many dementia care centers, and most nursing homes. Some places will only accept Medicaid if the resident has been self-paying for a certain length of time. Find all this out upfront, and try to avoid having to move Mom when her money runs out.

Start the search now, while you still have the strength and sanity to do it!

Hi again. My mother may not be as advanced as yours. She was diagnosed by her Dr. in December as being Stage 2, and he wants to retest her again in mid April, at her next appointment. Yes, she hates going to respite. The first time was awful, she cried, I cried, but promised her that I would pick her up..she said, "I bet you will just leave me here". After a couple of months, I found a place closer, and she cried to go to the one that she is now familiar with...so we continue to drive to Lakeland, Florida for now. My mother can't stand change and never could. This facility is a very nice one, and is private pay. We pay per day.. we are trying to make her money last a little longer. Here is the honesty of it..she receives 1084.00 in social security, 107 in a pension..and that is her only income. She has a little money, but if she was in a facility full time, it would be gone in a year. We are in the application process of VA Aid and Attendance right now. We pick her up tomorrow, and yesterday she was calling to come home because her stomach hurt..which is a more than once daily complaint of hers..I told her that there are nurses there, and that she will get more attention from them than she will from me. I've gotten to where this time is very, very precious to me. She had cataract surgery, and at her follow up was fitted for glasses..they wanted her back in at the time she was going to be gone..I said, "Nope, can't happen, ship the glasses to her, I'll pay for it"...and that is what they did. She said they are fine but need adjusted just a little..she has another appointment coming up to have that done. I schedule respite care first...and everything else around it. It took me a while, but I've learned to be selfish with my time. My husband got me tickets to see Cher in May, for Valentine's Day..I've already booked the hotel, and respite care for mom...I'm going to turn my phone off during that long weekend. Last week I went to Downtown Disney with my 2 daughters and granddaughter for a "Girl Day"...I felt like a real person again. We took my 4 year old Granddaughter to the Bippity Boppity Boutique and had her dressed up like a princess, took the hot air balloon ride, and ate at the Rain Forest Cafe...I don't think I thought of mom that entire day. You will have to get away, or you will go nuts. I know it upset me when mom called yesterday wanting to come home. I called my husband for reassurance that she was fine, and more than well cared for. I'm 43, and still love to go to museums, concerts, and love to dance. Mom has been here over a year and a half...my youngest daughter had just graduated and moved out in 2012..then here comes mom. Luckily, I have a wonderful husband, but I think he is to the point that he thinks we need to look for something more permanent. He sees it is wearing on me. I'm in school full-time so I have some stress with that..but the stress that comes with mom is worse..she hates to leave the house too, has a very hard time getting in and out of the car (even with my assistance), says riding in the car hurts her, but will ride a long way to the Dr. that hooks her up with hydrocodone and pain patches. My biggest fear through all of this, is that when she runs out of money, she will be on Medicaid in a place that isn't near as nice as where she goes now. (I've already checked and it does not accept Medicaid...from what I've read, and the places I've checked around here, most "Assisted" living places are private pay)...so for now, we will continue with the monthly respite for a few more months and then see if her health is on the decline or stagnant for the time being. My daughters are telling me that this is changing me, and that they would support me putting mom somewhere. An experience like this is awful, and humbling at the same time. Respite care has temporarily saved my sanity for now. JeanneGibbs is right..start searching now!!! It is awful how the days turn into weeks, then months..then before you know it YEARS, and you have put in many years already!!! I know you love your mom, I do too...but they change and aren't the same anymore. You have to save yourself for the other people around you. We are here for you!!!

Oh, I wanted to add one more thing. Mom has a cat. She loves that cat like it is her baby. (They do allow animals where she goes, but I'm so afraid that it will dart out of her room and she can't bend over to take care of the litter box). She says that all she cares about is her cat..(that is nice to know)..anyway, you asked about her being confused by her coming and going. Funny, she comes home, and I make sure to put everything back where it was as I clean..we leave all her necessities out on her bathroom counter to make it easy for her..but she will act like everything is brand new. BUT..she remembers that cat, and that is the first thing that she will ask about when she calls. One time, before we left, she wore 3 watches, and about 10 bracelets on her arms (I didn't ask, and I didn't care). She had put them in a drawer in her respite room. As I was packing to bring her back home, I pulled that stuff out, and she said, "I didn't know you brought my jewelry". I just said, "I think I remember seeing you wearing it here". Her confusion hasn't disrupted too much. She quickly gets back in the routine..we make sure we pick her up by dinnertime, to get her home and settled in before bedtime. We have had a few issues of her getting up in the middle of the night..to get ready for a 6:00 a.m. Dr. appointment, that she swears I told her about. (If she really does have an appointment, I try to schedule them for the afternoon). So far I've been able to tell her, "You can go back to bed, we aren't going anywhere", and she does. I know if she starts keeping me up in the night, we will definitely have to think of putting her somewhere full time. Luckily, I love mysteries...because I never know what I'm going to get out of her. She does better with schedules..but sometimes her internal clock is off. Day by day!!!

Whoa. 8 years, no real help or respite at all? Yeah, you are panicking because it is already intolerable and showing signs of getting worse. Your story gives new meaning to "sandwich generation" -you are the filling, and you are getting smooshed.

Her physical level would allow for an assisted living placement if you have funds for it. Your Area Agency on Aging would be a place to turn to find out about respite and day programs or home health aide supports for you if you can't get Medicaid for nursing home care right away and that's your only choice due to funding.

Those are actually mini-doses on the Ambien and Ativan. Use what works. Weird and paradoxical side effects happen to a lot of people. About double what she is using now would still be very reasonable, but check with your doctor of course. Both you and mom might need to consider Rx for depression also, though you may feel better with just a reasonable reduction in the burden of care you are currently providing.

HC, where are you in the process of getting help? I care! So do a lot of others. We'd love an update.

Hi there, I would love an update too!! We are here for you!!!