Hi, haven't posted in a while and wondering what to do about our new issue. I can no longer do this caregiving and keep my sanity. I am in a terrible state of depression, irritable and very anxious all the time. I want my life back and cannot find any options to make this better.

My husband and I have decided that we can no longer keep his mother here, mainly because of my personal well-being being so stressed. The problem is the only option we seem to have for housing and care for MIL is assisted living in an ALF...problem being expense. Totally impossible as we are struggling financially and she cannot afford the monthly cost of $4995/month. If she qualifies for Veterans assistance (husband was in the war) could come down to $1100/mo which could be workable. Problem is you wait 6 months or more to see if you qualify. So, cannot wait six months and cannot afford %4995/month. Nursing home placement is out because she is still pretty independent and needs basically just queueing and reminders and help with doing meals, meds, showering (for safety) etc. She fell two weeks ago and was observed overnight. If they kept her a few more days I probably could have had her admitted to the nursing home but didn't even think about that at that point.

So where does she go? I just cannot have her here anymore. We have the CNA coming in and that has helped a bit but I just can't even have her here at all, that is how bad I have gotten. I feel so guilty feeling this way but I really want to concentrate on my kids, my husband, my life and not worry about when she's going to get into trouble again (falling) or remembering to remind her to do something,etc. She is difficult when I try to do this and I just don't want the struggle anymore. What does someone do in this situation? Not feeling very hopeful about much, thinking the only way this is going to get better is in about 4-5 yrs down the road when she is at end-stage with this horrible disease. I cannot take it more than a few more months let alone 4-5 years!

I would still consider talking to nursing homes about placing your MIL there. You don't have to basically be an invalid to live there. My husband's aunt recently checked herself into one because she didn't want to live at home anymore.

Sorry you're feeling so stressed, but I can say that sometimes I feel that I am at the end of my rope with my mom, too, but at the same time, I can't let her go. I just pray my way through it and call on extra help when I can.

Good luck to you.

If an ALF is not financially possible you should see if there is a NH in the area that specializes in memory loss. My mother is in a NH and when she entered one year ago she was pretty independent but would not eat or take meds without reminders. She also would not shower or change clothes often because she did not think she was dirty. But she could dress and undress herself just fine.

This NH has 3 separate wings with 20 people in each and my mom is in the first wing that has the highest functioning residents. They can all feed themselves and are all able to get around on their own although many of them have walkers. Some are incontinent but my mother is not. She fell recently and that has caused a decline. Apparently that can happen with a fall even though nothing was broken.

Keep in mind that a NH will cost more than an ALF. Here is is about $6000 a month but many NHs will accept Medicaid. Unfortunately many of them want you to have enough money to pay privately for 4 - 12 months. Some don't though and will accept Medicaid patients immediately.

Oh Christine,,,sorry that your'e so stressed,,and boy,,can I ever relate to exactly how you're feeling. Please,,,just step back and take some really deep breath's and calm down. You've hung on this long,,a bit longer and you'll have things the way you want,,honestly.

I do hope that you've checked with more than one ALF. Also,,,,many times,,if your MIL was willing to share a room ,,,your rent per month would be less.

Also,,call the local council on aging and senior resources,,,they usually have social workers there that you can make an appointment with,,and they can show you a listing of ALF's,,NH's,,and also Adult Care homes too.

And if like the social worker and feel that she knows her stuff,,,you can ask her to "steer you away " from the crappy ones!,,and she will.

My Mom was recently moved from a 18 person ALF,,,down the street to an 8 to 10 resident home,,and is doing much better. The aides and nurses are much more able to interact on a one to one basis with the residents in the smaller home,,and this home is a "true alzheimers" home.

So Sweetie,,hang in there ok,,do your homework and leg work and find the best place for your MIL,,and the most affordable one too.

Oh,,and please don't "poo poo" the NH's,,,not all of them are bad. If they have a special wing for dementia only residents,,,make sure that they staff that works in that wing are specially trained to work with AD patients. Look for a Skilled Nursing Facility thats for non profit,,,then your MIL will pay her SS and any retirement she gets,,,and the state will pay the rest. Get her on the list now ,,,cause she may have a bit of a wait.

Be patient,,be realistic,,keep your compassion,,even when you want to scream,,tear your hair out,,and smack someone,,,this will all get settled. Your'e in my thoughts and prayers for the strength to continue to get you thru this. Keep us posted,,and come here to vent,,it will do you alot of good. Hugs & Peace

Short-term while you figure it out - can she go to senior day care?

FYI, on the vets assistance - they pay retroactive to the date of application once it's approved. At least some ALFs will work with you on it.

You may also want to look at licensed and unlicensed residential care homes (typically 6 - 10 residents) that specialize in people with dementia. The cost is often somewhat less than ALF, especially at an unlicensed residential care home. Yet the care can be very good, often better than in a larger facility.

For licensed facilities, you can get a list from your state Dept of Aging.

For unlicensed, just start Googling and talking to people.

Thanks every one for all the advice and ideas. Maybe I abbreviated ALF thinking of something else, or maybe not. I have been looking into an assisted living facility that is exclusively for Alzheimers patients. I met with someone tonight, the place was beautiful and the whole facility would be perfect and uplifting for her. They had a semiprivate and the price is $2895/month and a $2500 1x fee. We pay that and for her meds of course. She needs to be in there for six months and then the Vets will pay approximately $1100/month leaving her balance at $1795/month which stinks because her SS is only around $1400/month and her meds cost about $800 a month so we are totally in the hole already. She is in the donut hole with Medicare prescription coverage right now so everything is pretty much out of pocket.

I also spoke to a nursing home that specializes in dementia patients and they said to me unless she is admitted from the hospital or she is not independent and necessitates skilled nursing she cannot be taken in. All of this is so frustrating as it seems as though there are no places for these poor people to go if the family cannot take care of them. In our state a nursing home drains all of the patients money and then when that is gone they turn to Medicare for payment. So we would not need to pay, from what I am aware of, and that would be the perfect scenario.

I am going to call her social worker advocate tomorrow and get some direction and ideas to see what options we really do have as I may not be fully informed as to what may be available.

Thanks again for all the words of encouragement and support. I am trying to hang in but some days are really tough...On top of all this with her, my kids, finances, etc. I am either perimenopausal or moving my way into menopause with severe PMDD symptoms and periods every two weeks or so and that just adds to my psychotic behavior!!! Don't know how much longer I can remain in a sane place. Thank God for my mother (who is recently retired) as she is a wonderful help when she can but other than that I have no one else to help me through this with the extras and taking care of the boys, working. I really think I need some time out don't you seeing even when I am working I am still in this place I call home, i.e. the nut house. LOL

Bless all of you and thanks for the opportunity to vent all my dirty laundry

Go to your local social services agency and see if you can qualify her for Medicaid. The requirements vary from state to state. It would help if a medical doctor recommends that she be placed in a nursing home. --Jim

Oh,,just want to let you know to be very very wary of any ALF that wants to charge a "one time only fee,,,or registration fee",,,,understand that those are almost always "non-refundable"! And those places look like a million bucks,,but many times can fall short on actual care and activities and such,,,also,,you will have to use "their pharmacy",,cause all pills will have to be "Pillowpackaged".

They probably didn't tell you that either,,,and when they do tell you,,,they just quickly breeze over that part.

You need to get into your Dr and let him/her know how you are physically feeling,,and get something to help to to feel better without being looped out,,but calmer and more tolerant and focused. Get your Mom to stay with the MIL while you go for your appointment.

And you can still put her name on a list for any NH,,,its just if she goes in from the hospital directly,,it would only get her in a bit quicker.

I know how stressful this is for you,,,but you've not elaborated as to whats going on with your MIL that is making you so miserable and unable to tolerate her anymore. Has she had any medication changes? Do you feel she needs her meds changed or increased?

Where did you find the social worker at ,,,thats working with you in finding affordable and suitable placement for your MIL?

Look at some Adultcare living homes,,where there's a small ratio of residents that live there,,,those are usually much more affordable.

I know someone here said that they dont' even have to be licensed,,well I want my LO in a licensed home,,to be cared for by someone who is trained and skilled in the medical knowledge of AD. And see if the owner of that type of facility is an RN,,,does this home have an oncall RN?

Just take it easy,,don't be so hard on yourself,,,get to the Dr and get a physical and some meds for yourself if needed,,and ask your Mom to help you. I know your hubby is working alot,,and this all has fallen pretty much onto you,,,but make yourself stay calm and focused as best as you can,,and get yourself here every single day to vent,,ask questions,,whatever,,,just get here. Peace

The people who care for my mom have kept an unofficial eye on a number of older folks in the neighborhood who have a variety of challenging circumstances. Moms caretakers know their way around a lot of different agencies, but when they are stumped they call our Governors Office, and that office has always found a way to help. Might be worth a try? Good luck!

Christine, you poor thing! I really sympathize with that PMDD thing you're dealing with. You simply must talk with your doctor about getting something to help. It is a difficult time of life and dealing with an ADLO on top of it, wow!

Hang in there, something will turn up for you. Just make sure you do your research well. There are a lot of things to consider and just because the place looks great to you doesn't mean your MIL will benefit from all the "window-dressing", as I call it. It is really about the care that is given and the ability of the staff to engage our loved ones.

Take care of yourself! Here's a big hug for you!

Prices and availability really do depend on the area. All of the ALFs in this area charge a one time fee. Then there is a monthly fee and an additional cost depending on the level of care needed. Make sure they are including all of the costs in the dollar amounts they are giving you. I had a few that only mentioned the monthly fee and that sounded really good until I got a price sheet and found out it almost doubled with the level of care fee.

Lots of people recommend small residential homes but those do not seem to exist where I live so that may or may not be a possiblity where you are.

When talking to the facilities make sure you are not overstating your MILs independence. If she needs someone to make sure she eats and takes her medicines and make sure she does not take medicines too frequently that is not very independent. In a NH they will be given their medicines. In some other facilities they will simply be reminded but because they have aides and not nurses they sometimes cannot give them the medicine or insist on the resident taking them.

Raven made a good point about the meds. My mom did not have Medicare part D because her meds were not very expensive but when she was admitted to the NH the first month the meds were $600. You have to use certain pharmacies and they have to be pre-packaged so they are usually more expensive. They had added Namenda without my knowledge so it was cheaper once I told them to drop it.

I know how stressful this is for you,,,but you've not elaborated as to whats going on with your MIL that is making you so miserable and unable to tolerate her anymore. Has she had any medication changes? Do you feel she needs her meds changed or increased?

Raven,
Well with the fall about a week or so ago and her reluctance to follow any directions or advice from the visiting nurse, CNA, physical therapist I am even more paranoid that something else is going to happen, i.e. fall etc. Not to mention that I think I am just so worn out by the constant reminding and extra care that she needs in regards to her eating patterns especially at nighttime as far as her diabetes issues and her constant requests to be taken places regardless of me telling her that I have plans with the kids and cannot do it, etc. I did give her the option of calling her other (good for nothing) son and have him take her but no go. She is having a harder time remembering directions (regarding safety) and not doing certain things, etc. Just am so overwhelmed.

What is "pillow packaging"? Jim and I have decided that the assisted living place I went to tonite is out as we cannot swing it so back to the drawing board. There are not many facilities servicing AD patients other than the assisted living or NH. I really hope there are some other options and/or ways to get her into a NH, but not too sure. I will check with social worker and see what she comes up with.

We had originally agreed (husband and I) that we would trial her being in the in-law (after realizing how bad she really was) apartment for a few months and now we see she is forgetting more and seems to be getting more confused not to mention just sitting there zoning out all day. She still refuses to go anywhere except that damn casino or her sister-in-laws house on a Saturday night after church. She can be very strong-willed and stubborn and is never open to any other option. So maybe I will try to get longer CNA coverage while trying to find out if we can get her placed and until it happens if it is possible. I am just so done with all of this, I really do not want to live my life like this any longer and I am getting so resentful of her and her presence and I am hating myself for it. I waited a long time in my life after a bad marriage and divorce (no kids) and remarried at 35 and wanted kids for so long and here we are 9 years later, 2 beautiful boys and I am lucky to have a job that I can do at home and enjoy them while they are young and as fate would have it, I can't because she (unintentionally) is throwing a so-called wrench into it. Aren't I the most selfish sounding person ever? I am sure I sound pretty pathetic as many of the people here have it so much worse than I but I have struggled with depression and posttraumatic stress disorder since about the age of 7 and I have been in counseling multiple times and continued again after the birth of my first son (postpartum depression) and still go; so somewhere inside myself I feel that I really don't deserve to have to live my life like this. We made this decision probably without really checking out the true condition of her before we did all of this and that makes it even worse as we did this, not her.

I am on meds (have been for many years) and now I have been taking Alprazolam (extra for anxiety) and I am still a bundle of nerves waiting to have a nervous breakdown! I am a perfectionist and the failure of not being able to handle this makes me feel so bad. I sound so horrible and probably a little nutty but I know I am not a rotten, mean-spirited person nor do I disrespect family and that bond and responsibility that comes with it but I really feel like a failure as I cannot handle this whole situation. I really do not want my mom to help anymore than she already does as this is not her problem, she mainly does it because she is so scared I'm gonna lose it and she is very worried and that makes me feel even worse to have her worry so much about her 44 year old daughter who should have it together. What a mess I sound like, huh? Sorry I am a babbler tonight...

What about adult day care until another living arrangement can be made? In my area, the state will pay up to 30 hours a week to certain facilities for very little (if anything) money. It could give you some breathing room for now. Taking care of an AD person, financial difficulty, and going through menopause...now that's a perfect storm!
You need a break right now

You have to focus on yourself and your emotional and physical needs... If you can't do it for yourself, do it since so many others (your children) depend on you.

Are there other NH's in your area with dementia units? Visit them (without your MIL) to see the level of functioning of the residents. Some have quite high functioning patients who need the safety of a secure unit, need help with meds,etc.

Get her on the waiting list and meanwhile get the Medicaid application from your state so you can see what info you need to gather and what else is required.

For eligibility for Medicaid, You may have to repay the cost of the MIL apartment if her moneys paid for it within the past five years(or more accurately she'll be ineligible for Medicaid until an equivalent amount of money is spent on the NH).

Have your husband do the research on Medicaid.
Get everything in place.

Make sure he understands how fragile you're feeling and how this current situation is not good for the family.

Could you rent out the apartment and use the funds for her care?

Meanwhile, get all the help you can-- for her and for you.
I don't know what State you live in, but call the Office of elder Services to see what help and services they offer.

You deserve happiness. You deserve ease. You deserve to have your life back.

Oh Christine, if you sound like the most selfish person in the world then all of us on here join you in being the most selfish people in the world! We all feel like that, have felt like that, etc... This disease is so hard to deal with, it just sucks the life out of the caregiver. No one here judges and you will see many posts from people feeling the exact same way as you do.

One of my biggest panics with my mother was placement and cost. It's unbelievably shocking. SHOCKING!!!!!!!!! I'm still trying to sell my mother's apartment before the money runs out, but it looks like I might have to do a "fire sale" if this thing doesn't move quickly. To be honest, all of her money is going to go anyway, but I just don't want to feel as though someone took advantage of a situation where we were desperate to sell. Ok, off topic I know.

Nursing homes get a bad rap. There are different levels of care. There are some nursing homes here in NYC that actually have a bar! They do outings, trips, etc... And although they are more expensive than ALF's, they can't kick anyone out due to no more funds. You and your husband should not be footing the bill, it needs to come from her money and when her money runs out, Medicaid will come into play. Get in touch with an elder care attorney who can go over all of her options and do estate planning. That my friend is a service that is worth every penny.

Good luck with this. You deserve your life and you and your kids deserve to spend happy times with each other. What you are feeling is normal!

Regarding meds in an ALF, if that's the direction you go; our Safeway store orders mom's meds in the pillowpack for us. Mom's ALF said if we could provide her meds with the pillowpack we didn't have to use their pharmacy. It's a lot cheaper and for us it works just fine. I would bet that many drugstores would order the meds in a pillowpack if you ask. You never know what can be done till you ask.
Marie

OH Sweetie,,,you're not selfish,,so banish that word from your vocabulary!! Your'e completely normal. I too felt the same way about caregiving of my Mother. I had been at it for as long as I could do it,,and I was getting to feel very resentful towards my Mom too,,,I also wanted my life back.

There's no "time frame" as to how long someone must be a caregiver,,nor should anyone ever feel guilty for not wanting to continue as a caregiver.

Call her Dr and meet with him and see if he can offer up some help and assistance in getting her placed into a good NH that does have a specialized section for Alzheimers. Just ask the Dr if he/she themself are able to come to the NH and still tend to your MIL's medical needs...or would she have to switch over to the staff dr at the NH.

Try to relax,,keep on checking and looking for places. Oh,,pillow packs are a persons daily meds all in a plastic encasement on a cardboard type thing,,with a 30 day supply of meds. So if someone takes 10 pills a day,,,then the aide that dispenses the drugs,,will pop bubble number one,,and all the pills for the day are in that one bubble,,,next day,,the same deal. There are usually 30 bubbles per package/card. Peace

I have been trying to get some help through the VA for my mother. Father is a retired Marine. They will not call me back and it's been 2 weeks that I've been trying to get started with this stuff!

That stinks. If you have to wait 6 months to be approved.

CWright--
It can take longer than six months for approval (the VA is backed up) BUT you will get funds retroactively from the day your application is received...

If you go the Find key on the purple bar and type in Aid and Attendance, you can learn from past discussions on the topic...

Thanks all. I am still a little discouraged, bad day overall. Social worker will not be in for rest of week, doctors office didn't call back in responding to my 10th request to forward her records to the Memory Disorders Clinic so I can get her an appointment, it has been about a month now i have been trying to get that done, my computer for work died and I lost a whole day and night of work, not to mention mil was very confused today and gave me a couple of scares.

Let's hope tomorrow is a little brighter..although I hear we might be getting snow!!! I hate the winter, give me warm weather any day with flowers and trees and birds. Winter reflects my mood...gloomy, brown and cold!!

Thanks again for everyone you don't know how much all of your pep talks keep the little bit of sanity I have left intact.

Blessings to all of you.

Hi, Christine, It's nice to hear from you again. I've been thinking about you and wondering how you and your family were faring. I told you before you are an intelligent woman and you will make the right decision when the time is right.

Don't be so hard on yourself. There is a book that helped me when my life came to a virtual standstill from anxiety. The book is Hope and Help for Your Nerves, by Claire Weeks. It is out of print so you will have to search for it. But it is most helpful in dealing with severe anxiety conditions. Perhaps you can find it in the library or on Amazon or in a used book store.

Hang on for a little bit longer. I wish you well.

Iris L.

Thanks Iris, nice to hear from you again. I thank you for the suggestion about the book, I will look around for it. I have had my anxiety under pretty good control with Zoloft (to help with my other issues, etc.) but lately it seems I am having an all-day anxiety attack every day. I can handle them but I hate them and get so agitated and it seems to make me so depressed I guess.

I did get some answers today. I finally got an appt at the neurologist's office who specializes in memory disorders and Alzheimers. So that will put some of my confusion and guilt about maybe thinking I am making more of her situation than it is (even though I know how bad she is getting) into perspective. Her PMD called today to see what help she could offer and she let me know they have a social worker at their office and she will arrange to have her meet with me to discuss about how and where to get her into a nursing home. Can you believe this actually came to be? I was feeling so hopeless. I realize it may take a while but at least I know she will have some place to go. That was the scariest part in all this. Her social worker that I have been working with was so understanding and told me the best route was to go through her PMD so... We'll see.

Thanks for your suggestion on the book and it has been nice to talk to you again

Christine,

I didn't get on last night, so I missed your REALLY bad day. So sorry you had to go through that.

To reinforce what others have said, you are NOT a selfish person. You are realistic in recognizing what you can and CANNOT do. I have felt selfish myself for wanting the dream of a retirement lifestyle my husband and I always planned for. Mom began to spiral downwards almost as soon as I retired. Someone said this disease expands to use up the time, strength, and energy of caregivers. You have other lives to consider, and if your MIL were in her right mind, I don't think she would want her grandchildren to suffer because their mother was spending more time on her care than theirs. Your children are too young to understand this completely, so do everything in your power to do what needs to be done to see that everyone (and that includes YOU) gets the best of care possible, given the available resources. You are just ONE person. You cannot do it all.

And yes, having her PMD on your side is the best way to go.

Hugs to you!