Help! I'm stuck in neutral...what's next?

don't beat yourself up about not recognizing the dementia. My grandmother hid hers so well, we didn't realize for 8-10 years. She seemed stable for a really long time, it wasn't until we noticed she was having difficulty managing money; she had done so well in the past. As her dementia progressed, we began noticing other things, agitation in late afternoon and evening, change in appetite, increase in hording behaviors, letting others do tasks for her (which was so unlike her), etc. Then she started to have some medical issues and her confusion increased, she would burn pots & pans and throw away the coffee part parts. We worried she would burn the house down and hurt herself so she moved in with my parents and I helped to care for her for a while. Once her dementia progressed to the point of hallucinations, up all night, refusal to eat or bathe I knew we needed more assistance. It was then my dad made the difficult decision to place her in a nursing home. I was there 5 days a week and my parents would visit on weekends. People are very good at hiding their shortcomings by joking or saying they will do it later or come up with an excuse that sounds plausible. Purchase some small plastic totes (like shoe boxes) or use any other type of box. go through mail and other papers, label the boxes, deal with now, save, throw away, deal with later for anything that can wait for 1 month. Once you have everything sorted, the deal with now box; sort into folders for each, health insurance, medicare statements, life insurance, bank statements, hospital bills etc. do the same with the deal with later box. I know this is time consuming but necessary so you can get a picture of her business. Contact your local area aging on aging and ask about their caregiver support services, especially the respite. You can use respite to assist you until the doctor completes the forms for the attendant program. Ask them if there is an adult medical day care, then see if you can get your mom in. It's a great program and it gives you time to do what you need to do for you. I know it can be frustrating, but you are not alone. There are many first time caregivers and it can be overwhelming. Utilize all the assistance you can find. If your mom is still able to discuss her medical wishes, such as the kind of care she would want should she be unable to communicate, ask her now. This will help you later on down the road when these decisions need to be made. Ask questions anytime, there are many caregivers on this site. Don't know if what I said will help, but good luck. You can do this.

Hang in there dear. It is all part of the progression Of dementia. Some good days, Some not so much. You can only do what you can do. Don't judge yourself harshly. If professionals have a hard time agreeing on symptoms, don't expect Dr Quinn Medicine Woman from yourself. Just love the good times because those are what your memories are going to be based on. I hope your Mom heals soon and please try to get your own rest and take care of yourself.

Thank you everyone!!
SO many similar stories let me know I'm not alone!!
Especially the ones that tell of "normal" behavior with others !wow!
Today has been terrible...in the ER again!!
Found out mom broke her toe and no one knows how...especially mom!! Sigh!!

Beachdiva, Go EXERCISE! It'll make you feel better besides prolonging your life - keep your heart beating with strenuous exercise and reposition your views involving your life at least for a number of hours per: day. I try to swim every day. So, in saying that the reality is I swim 3-5 times per: week. It's not necessarily a "glorious" swim but it is 15-20 minutes of heart "pounding" exercise that works the kinks out of my body so I can continue for another 5-6 hours without any medication. You'll feel better and you'll be doing something for yourself that is an important care factor as well - taking care of YOU!

Wow, Ilovemom2, that is a great story. Let's here it for AL.

Oh, and one more thing, Beachdiva, just because this has been "going on" for five years, doesn't mean that it has been equally intense. This is a progressive disease. You recognize it now because it got so bad. there is sometimes rapid onset but usually it starts slowly, oh, so slowly.

OH, yes, this is the rule--not the exception. my husband and I took my mom away for the winter about four years ago--wow! We had had no idea! We had been visiting her three time s week for a couple of years and, during those short visits, everything seemed fine. But we took her out of her environment; we changed the game plan--and yousa! She was a totally different person. From that point on, it has been pretty much downhill and she is in AL, and happy, I hasten to add.

At that time, I remember saying that I didn't understand how I could have missed it, and I was told that often people living in the same house don'e see it.

Now you belong to our "club:" the people who understand how hard this is.

KalaFW -- your story sounds all too familiar.
I get that left and right with my mom. She's so inconsistent, too. She complains she's bored or lonely and then we try and get her out, to dinner, to shopping, to a movie, the park, anything ... to visiting my in-laws, etc. Nope, can't be bothered.
We tried to get her to go over Thanksgiving and she refused, said it was too much, that she "just saw them." Then she cancels Xmas, too. Last time she saw them was six months before.
At this point I'm embarrassed because they try to be nice and invite her, knowing she has no other family than me and she has weird excuses all the time, whether it's too early in the day or whatever.
Then at the doctor's too. She'll say she hurts or she's anxious enough to get xanax or vicodin and the rest is hunky-dory.
Then she yells at me, making weird accusations, or she says I'm pressuring her too much (what, by reminding her Thanksgiving is two weeks away?) It makes me feel crazy.

Heidi, I am sending you a high 5 and a Hallelujah and a Preach it...lol....this masking is so common, we were fooled for YEARS. My foot hurts, I can't breathe, I'm dizzy, I fell down, I am bruised, I got lost driving...then you take them to the doctor, anger outbursts, no short term memory, treating you like a junk yard dog (no offense to our canines!) ...and suddenly you look like you are the one losing your mind coz the patient is now sitting there, polite, well spoken, denying everything, anything....and everything is fine, nope don't hurt, haven't hurt, don't remember falling except maybe a year ago, nope not dizzy, feet feel fine, don't have any complaints...You have company over after warning them that mom or dad has started losing their memory and may have ALZ or Dementia...and the parent is at the top of their game, entertaining, story telling, laughing...until the door closes behind the last guest...then it is back to like 'whew, that pretending and masking wore me out, back to making your life h*ll now'...and you look like you are the one seeking attention.....now it is totally obvious MOST of the time...but again get them in front of the doctor and nothing hurts. My father had surgery last month coz he had food stuck down in his throat and was throwing up and was taken to the ER for a CT scan and exam. How did he feel? Just fine, just not hungry.

My mom always thinks I'll have to pay her hospital bills if she dies.

Got to say...children are not responsible for parents debts. If assets don't cover the debts, the debtor is out the money.

A while back someone on here recommended the book 'THE 36-HOUR DAY'....and I've found it to be a huge help (thanks!!).....thriftbooks had it for only about $3.00...I would highly recommend it to anyone having to deal with dementia.

It's harder to notice it when it's happening in real-time in front of you. And lots of older folks seem to behave differently when evaluated by a doctor, etc., so they can't always a totally honest assessment. My mom complains left and right about stuff -- aches, pains, dizzy, whatever -- then when she goes to the doctor it's all fabulous.

Beachdiva, the reply from Babalou and some of the others is 100% correct. We OFTEN do not think "Alzheimers! Dementia!" when our parent or spouse (or whoever) is starting to do those 'odd' things. We normally just mark it up to 'well, he or she is getting older and set in their ways or they've always been like this and just amped it up in their old age'. I'm willing to bet that most of us never knew much at all about ALZ or Dementia at all...until someone close to us was formally diagnosed and THEN we started reading and researching and learning about this disease. you are NOT to blame for not recognizing the signs. There is a saying in the ALZ community 'if you meet one Alzheimer's patient, then you have met ONE Alzheimer's patient, since each person's symptoms can widely vary from each person afflicted. I, like many others who post here, consider myself a well-educated person. I spoke with my 90 year old father every single day, saw him several times a week for extended periods. Yet it took a fall, broken hip, and a hospital surgeon to recognize that my father was in the middle stages of ALZ. My father had been seeing his own family doctor every THREE months for over 20 years (for COPD breathing type problem), yet the doctor never once diagnosed him with either ALZ or Dementia. One factor is that oftentimes a traumatic event will escalate the ALZ or Dementia symptoms so that it is now boldly visible. My father's entire character declined after his broken hip. So do NOT feel guilty that you didn't catch this last year, the year before, or the year before that. It is the people who rarely see the afflicted person who normally recognize the signs before we do. To us it is just a gradual 'mom is getting older or senile'. We see public ads about heart disease, skin disorders, breast cancer, how to check for signs or symptoms. But you rarely see TV ads about 'how to recognize signs of ALZ or Dementia'. We just chalk it up to someone getting older and forgetful.
Like many other ALZ patients, my dad masked his symptoms, and still does. He will give vague answers, change the subject when he doesn't have an appropriate answer, will ask a lot of questions to try to pinpoint who someone is. I think it is called 'social masking' or something like that.
You are doing everything right, you are taking the correct steps to assume legal control of the situation as well as you can. Now please slow down, take some deep breaths, do something nice for YOU, and realize none of us get it right 100% of the time. Because what works today may not work tomorrow or even may not work tonight. We adjust as their bodies change to the disease.
The most important thing is you MUST carve time into the schedule for YOU. And I don't mean just an hour here or an hour there. Start introducing home health care, volunteers, someone to do the heavy cleaning...or someone to help you bathe and dress your parent...whatever you decide to do, but start it NOW. Don't wait until your parent or spouse is so used to just YOU doing everything that it would be a shock to them and a battle for you to start bringing in help. I made that mistake and it put me in the cardiac wing of the hospital for over a week. Even if you don't need extra help now, do it. Trust me on this.
It is very common for ALZ patients to lose track of time, to not realize time periods. To use it has been 2 months, to them it may be yesterday or 2012, or 2 weeks. Just start reading everything you can on this disease but don't be surprised if your parent doesn't follow the normal progression/decompensation (inserting smile here) coz each patient is different.
I wish you well and always know so many are here to comment, offer support, share their stories.

Thank you Sunny! Sorry, I'm wordy, but you you got my point. I had worked my whole life towards a goal, I lived 350 miles from my mom and many siblings, but every time there was a problem, I needed to close down my brand new store, travel down there until I found the next permanent solution. My store was closed more than it was open this year and I lived away from my husband and home. After raising my own family, this 53 yr. old woman was back sleeping in the same old bedroom, with the same paint and floral bedding from when I was ten and nobody had cleaned those windows since then either Only now my 60 yr. old drunken brother who was a hoarder and smoker, who couldn't care for himself was across the hall too. Was that my plan? no. If you don't make a plan for your parent, you can forget all your plans too because even with 24 hour help in the home, it's still a huge job. I want BeachDiva and others to know this, that is why I'm taking time today.

Beachdiva, dont feel bad at all. My Mom lived alone with dementia for quite a long time. I came every weekend and called several times a day. She was as stubborn as they come and in no way was she moving out . Sometimes we see signs but we dont want to, and ignore them. Regardless it doesnt matter, we cant do anything about it anyway, meds dont work on memory. On my Moms doctor visit that I took her to, the doctor said when they have a routine they manage quite well alone during the first years. Routine is their life. I could do nothing to get my Mom to move in with me, and so be it, she wanted her own home and to be happy. Something always happens , and it did, she fell when I was on my way over there, on the ice, and broke her hip. I knew she had memory issues but I denied she had reasoning issues. I told her not to go outside to get her mail, its icy out. She said to me "I am not stupid, I wouldnt, its not worth it!" But, guess what, she did. Argh.
She now finally lives with me and forgets she had a home. When you say your Mom thinks she has only been with you for weeks, thats fine. Dont tell her the truth (theraputic lies begin right now), agree with everything she thinks and says. If she says shes been there only one night, tell her yes and what a fun night we had. Always agree with her. Think about it, if someone told you that you were someplace for months, not weeks, wouldnt it scare you? Yes her to death, she is always right, lots of touching and hugging and talking, and loving her is all you can do. You have a very long road ahead, I am still on mine here over 7 years with Mom in my and she had memory issues before moving in. She can no longer talk or walk but I can sure make her laugh still and there are things I can tell she understands still. She hasnt known me in years but I know her, and shes my sweetie pie forever. Good Luck, hang tight.

I love mom to is diffently right about us needing time to ourselves I'm still learning that I'm doing the right thing for my dad and myself you might feel a lot of guilt like I do on making all the decisions with our parent my brothers sisters I don't even ask there opinions anymore they never help when I need it

Very impressive question BeachDiva! Don't worry about the past, you're lucky you had five good years, she's okay, you're okay. I have a huge family and knowing doesn't help, planning helps. I would take a good look at your future and decide now how best to achieve it. As your mother's conditions worsens are you planning on being home all day? Do you want a revolving door of caretakers in your home? My brother out of the blue just said to me "with all this knowledge we now have, it's all wasted, too bad". This is why I'm here, I'm not wasting it, I'm sharing it. We lost our mother last month and three siblings before that. We kept my mother home for 5 years with 24/7 caregivers. It was expensive and a lot of work, who are they going to call every five minutes with a dilemma? You!!! It's still a lot of work even with the 24 hour help, doctor appointments, medicines, bathing issues, falls, supplies and groceries, constipation, the list is endless... Looking back, we wish we put her in assisted living earlier. Keeping my mom at home tore my big family apart, it's very stressful. As I was saying... Assisted living was far cheaper, we switched to their recommended doctor who made house calls, two nurses in the building all day, she went to the beauty shop there, they had a fancy dining room with fresh flowers, where she ordered of a menu or could have room service. In the morning, they had a coffee bar in the lobby and at 4:00 it turned into a happy hour bar with wonderful live entertainment, appetizers and beverages. She made friends, they were my friends too. She had a beautiful apartment, her living room was furnished with her own things. She had a cute kitchenette with her hutch from home. She had her own queen bed and dresser. Beautiful floor to ceiling windows on a corner with two adjacent sidewalk cafe bakeries. I never had to worry about the medications again. She went from laying on the sofa in a robe all day to wanting to get up and looking good. Unless you are totally prepared for your life to revolve around your mom, I would put her in a place where she is cared for and having fun. The nurses, aides, caregivers and other residences became our support system in the end. I never had to change my mothers diapers, they did it. They gave her dignity. They nursed her no matter how sick she was. My big family had more fun at assisted living, then we did in that big old house, which also demanded a ton of work and expense. In the end, it was a thousand dollars cheaper a month for AL. We wished we did it five years earlier instead of the constant turmoil. Good luck to you, you are starting the journey we just ended!

Sunny5: I can hear the guild in your voice....and a little anger towards your siblings (maybe rightly so) Since you are the major care-giver, you have the right to make the major decisions about what he should or shouldn't be told.

That word Neutral is exactly how I feel too . I know what your going through my Dad's been sick for 3 years now . HE no longer can live by himself, while he was in 100 days skilled therapy he's 89 . I started looking at homecare which turned out to be too much money having someone to come in to his home 24 hours a day . I knew he was too tough to want to live with me his daughter he would fight me everyday telling me he has a home of his own it s sad but I have to do what's best for everyone. I didn't want nursing home to take over his life . In our county I found a senior group home she has aides around the clock he has his own bedroom , tv and he can go out to the living room , kitchen if u want to take him out on visit s or outside it's a home away from home but he also thinks he's in NEUTRAL thinking it's just rehab and he's going home . BUT I DON'T TALK TO HIM ABOUT HIS HOME WHEN I Visit I CHANGE TO ANOTHER SUBJECT.but I have two brothers and sisters that visit him at the home but I'm the one who has to do everything I m not sure if there bringing up his home to him then I have to deal with him asking about home.

Some of the best advice here (from Babalou) is let the guilt go, make a list and start the tasks. Also, do not look at the whole picture all at once, otherwise it could be overwhelming. Divide the tasks into projects monty627) and just hack away at them, one at a time. You can do it!

I think you have to live with the person to realize how they are going down. The person is very good at covering in the beginning. They are able to hide it well. but when you live with them, you notice everything. Quirky habits become declining brain damage. I was able to go to work and leave him at home for the first 5 years after he was diagnosed. Then I was watching very closely and saw that it was time to stay at home. I had to call him and remind him to eat the lunch I left for him. He did fine, but I knew when it was time to retire from teaching and be with him!

Leakey, I am full-time caretaker for my husband who has dementia and COPD. It is very different on many levels. I recognized back in 2008 that he was having cognitive issues that not only did he deny but his children did as well (and who are only now beginning to see it). Even his doctor at the time would brush off my concerns saying, "What do you expect, he's 80 years old?" It is a lonely and scary time, made more so by denial.

Hi Beachdiva. I think the most important thing for you is to not look at the whole picture all at once. Try to digest it all in one go and it can be completely overwhelming. Make the giant list and then go back and prioritize it. Try to get the paper work done first so that the legal stuff is out of the way. The rest you can chip away at day by day. The house doesn't have to be done all at once. Again, that can be divided into "projects ". I know it seems basic to say but try to breathe. After having one too many mealtdowns over my Mom's situation, that bit of advice from a friend was helpful. Best to you.

Great answers but none from a spouse who is the ful time caregiver it is much different

Thank you all...please keep this great advice coming,I am learning from you all!!

Beachdiva, our mom is in assisted living and still fooling people who see her for brief visits or talk on the phone. They think she is just fine! You got fooled too. Now you see the light and you make the right plans. Take her on tours of assisted living places. You don't need it now, but you will in a year. Get a working knowledge of what is available when the time comes, what it will cost and how to get aid to pay for it.

While you are at it, make sure you arrange for time off for yourself -- respite care, or have another family member or friend trained to take over, when you need a break, because YOU WILL NEED A BREAK. So many of us forgot to even think about this when we're setting things up, but taking care of ourselves is the most important arrangement we need to make.

Beachdiva, you have already taken care of a couple of the most important things. You'd be in real trouble if you hadn't. You are doing OK. This is new and unfamiliar turf for all of us who have stepped onto it. Or into it, which is what it feels like.

My cousin and I are both bright professional people, at least we think we are. I know she is - she is a pastor and can understand Greek, Hebrew, and Latin and gives some darn good sermons. She did even worse than I at recognizing her mom's problems - she had a whole house completely hoarded and dysfunctional from top to bottom and thought she was OK because she would work a crossword puzzle and recognized familiar people. She was making plans to bring her to live with her but she unexpectedly died, probably sudden cardiac. She had made a lot of mistakes with joint finances and got clobbered with Mom's massive credit card debts - that would never have happened if she had been cognitively OK.

All of us found ourselves doing things that needed done way before we understood and accepted the decline that was starting for what it was. I held out for probably 1 1/2 or 2 years thinking my Mom would improve instead of decline further. It is a lot to take in, let alone take and deal with. No need to add to the inevitable heartaches by feeling guilty for not knowing stuff you never had to deal with or think about before, about someone you love and care about and could not possibly have been objective about.

Thank you Babalou. You said what I was trying to convey. That subtle changes are not always easy to see or even understand.

Even once we did start the conversation about her driving abilities (?), it became a long discussion about who was going to become her chauffeur because it was 1-1/2 hours from our door to hers and we were the closest. They had moved away to a retirement community in the 1980's and were very happy there. I was already taking her to doctor's appointments and other places and neighbors were taking her for groceries and hair appts. We would pick her up and bring her to our house for visits and take her home most of the time because after Dad died, she wasn't comfortable making the drive by herself. Then she had to be hospitalized and that took the ball rolling in a different direction. She went from re-hab to our home. We do have respite with family members so it hasn't been too bad.

Anyway, don't think it all has to be done at once. Just prioritize, ask for help if needed and come here to vent and ask questions.