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

The others have given you good suggestions for how to proceed, but I want to address your concern that you didn't notice this decline. WHO SAID that this has been going on for 5 years? Was someone telling you for the past 5 years that mom was declining and you elected not to hear (no, I didn't think so). What the neurologist meant I think was that in most people, there are very subtle signs of decline in the 5 years before diagnosis. You don't notice them. MOST doctors don't notice them. You have to have year and years and years of professional experience and education to pick up on those cues.

Look, I'm a school psychologist, so I have a fair amount of training in neuro-developmental disorders, memory and cognition. I've got 25 years of experience doing cognitive assessments. My mother was declining for at least 3-5 years before we figured out that we needed to get her out of her home. We thought these were little quirks that mom was developing. Please, please, let the guilt go, make a list and start the tasks; you're your mom's BEST ally!

Don't beat yourself up over not noticing the decline. Most of the time, we don't see it. We tried to let Mom stay in her own home for as long as we could because she wanted to and had a lot of friends and activities. When we finally did move her in with us, those same friends and neighbors were relieved and didn't hesitate to tell us they were. That was seven years ago, and she still thinks she's just here for a visit. We've told her we've sold her house but she occasionally will ask us to drive her home, that she has things to do.

Make a master list of things to do as you think of them. Identify the most important, but occasionally work on the easier items.

As far as cleaning out her house, that may be a priority, because a vacant house is a target for vandals and squatters. Also insurance companies don't like to insure empty houses and premiums are expensive. Plus when you sell it you can get rid of utility bills too.

Selling her car may be a lesser priority because you can use it to transport her to appointments and save wear and tear on your own car. Use her money to pay insurance and upkeep and gas.

Have your mother do as much as she can around the house. It will help her to feel useful and more at home, rather than a visitor. If there wasn't a noticeable decline, maybe she still has some abilities. Dusting, setting the table, loading/unloading dishwasher, folding laundry, peeling potatoes and anything else she can do.

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!

Beachdiva, lots of folks here willing to help and support you. . But what area of concern do you have? Have you completed the aid and attendance paperwork? If not, that may a be a good place to begin. Is she with you temporarily or is there another residence that has to be dealt with? Are you POA? Are you her health care proxy? It is March 4, from a paperwork perspective - have her 2014 taxes been prepared/reported? That is a good time to gather financial records that will help assess possible courses of action going forward. Tell us your concerns (and your situation) and there will be plenty of help.

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.

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

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.

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.

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.