Learn me: Alzheimer's disease

So my Mom was diagnosed with it a little more than a year ago. I know there are a lot of resources, and her doctor and I have spoken quite a bit, but I'm interested in hearing people's experiences and stories.

It's tough to watch because she's declined rather rapidly, I think in large part to Covid, and the isolation it's caused. Mom and stepdad live in a tiny little house which, under normal circumstances, is perfect for them, but they've been largely confined to it over a year now, driving each other crazy, and not getting any of the external stimulation I think she really needs. Mom is 78, has always been sharp as a tack and really active. Stepdad is 94, the same, and is functionally, and mentally, still pretty strong. But he's still 94.

A year ago she was forgetting words and having trouble remembering things like how to make shepherd's pie, something she's been making for almost 70 years. On the weekend I went there to help her get a prescription that the pharmacy wouldn't release and she couldn't understand why, despite having tried 3 times. We got it figured out but when I got there and went into the house she didn't recognize me. I explained what was going on and she was OK, but that scared me. She has good days and bad, and she knows what's going on and is grateful for my help, (my Sister is not making the scene) which I certainly don't mind, but what initially was an occasional check in to make sure she was alright has become an almost daily occurrence to solve a problem or have a visit to make sure everything's OK.

I'm more than a little worried about how this is going to work out.

Two of my grandparents went down that road before their passing.

You need to make aggressive plans for downscaling and getting the help you need. I said plans, not immediate action necessarily. Get the levers ready to pull when they are called for. It will get to the point where she will need full time assistance and routine. 

You are right that being active is the best thing to try to do.  

My grandmother started doing things like taking off her pants, folding them, and putting them in the freezer. The more concerning thing became food, she was trying to eat raw sausage links one memorable time.  We wound up needing to move her to an assisted living home after my grandfather had a stroke and became wheelchair bound. It was a lot to figure out fast and it made the transitions messier than they could have been. Its time for you to have the conversations and plan things now. 

Sundowners is a thing, she will likely be her sharpest first thing in the morning.

I dont have too much else.   Its not a fun topic and I am very sorry for the road your family is facing. 

Author Terry Pratchett was very public about his Alzheimer's disease and made a few documentaries while he was still able. Here's one:

Later he made a documentary about assisted suicide. It was hard to watch due to it's nature, but worth watching if you are curious about the subject. Titled, "Choosing to Die" (2011). Pratchett died at his home on the morning of 12 March 2015 from Alzheimer's.

Reach out to all possible local services. Hospice, mental health networks, anything. What you are going through is very common, and you don't need to shoulder the entire burden (and shouldn't for your own good.)

I went through it with my dad without any help. Bad idea. It messed me up for awhile also. Good luck, it sucks, but it's part of life.

I have been through it very closely with my F-I-L and then a little more distant with my mother.  

The worst thing about Alz is that it wont kill you, it just makes living impossible.  It is very hard to see that the person you knew has left and all that remains is the empty shell.  

Yes, that above sound harsh; I know.  But, the whole thing is very harsh all around.  

I do give this one advice...Hospice.  If you have never used hospice, get the idea out of your head that it is death watch.  I knew a lot about hospice (or so I thought) and even I wished we had gotten them involved years earlier.   We are blessed to have a good Hospice here.  

I use this example:
Much like the "legal system" there is very much a "medical system."  Lets say in the legal system you needed something from the county courts.  You could try to do it yourself but you would likely go to the wrong building and not really ask the right questions or bring the right form so you might have to come back another day to actually get it done.  But, if you hired an attorney, that person deals with the legal system every day.  He knows where to go and what to ask.  He might even tell you, "that's not what you need, what you really need is..." 

The medical system is similar.  You can try to muddle trough and you might eventually get what you need.  But, the hospice people live in this "medical system" every day.  I give this example...

My F-I-L was prone to fall, so in the facility they would seat him in a wheel chair with the leg holders removed.  This meant that he then had the ability to use his legs to move around but he was seated and not at risk of falling.  However, he would fall asleep in the wheel chair and this meant he was slumped over in a wheel chair for too much of the day.  I mentioned this to hospice and they said, "he needs a ergonomic wheelchair."  A what!?  I had never heard of such a thing and would have never known to ask for such.  Sure enough, hospice made the arraignments and he had one the very next day.    

Hospice also gave us an entire set of nurses and doctors to overlook the actions of the facility nurses.  A whole second set of eyes. 

I specifically remember one event where my F-I-L had some sort of health episode that got him taken from his facility/home to the hospital.  I clearly remember it was a Sunday and on that Sunday, EIGHT people from Hospice stopped in the room to see him/us.  On a Sunday!  These were medical professionals all in addition to the real visits from the real hospital staff. 

Notice I said "us.".  Our Hospice did an exceptional job of tending to not only my F-I-L but also my M-I-L and my wife and I.  My M-I-L is a strong lady and not the type to ask for help.  Without her always realizing it, they did a great job of counseling her too.  This could be as simple as someone meeting with the her or calling her to, "see how its going."  This gave her a place to vent as well.  

Again, the advice is call Hospice sooner rather than later.  If you call, they will do an assessments.  If they can help, they will.  If they can't, they will check back in with you at a later date to see if condition has changed.  

Yes, I realize that different areas have different quality of hospice but we here, at that time, were very lucky to have a good organization to call on.  

I wish I had some sage advice for you. My mother's father succumbed to it. It's heart wrenching to watch someone look at you with knowing eyes yet not having any idea who you are. 

Yeah this is something that has definitely touched the GRM family more times than we like to think about.

Best advice I can give you is to get an elder care attorney involved. Probably the single biggest resource we had from managing my MIL's finances, to arranging for care all was guided by our excellent lawyer. It seemed expensive at first. By the end it seemed like an absolute bargain.

Other than that, it's awful. It really is. Do not hesitate to seek support at any time during the journey. The true sufferers of Alzheimer's are the ones that don't actually have it. Find creative outlets for the inevitable frustration and sadness. Really wish I could give you some "bright side" options here, but it's a tough journey. Being prepared early is a great start.

I volunteered in a nursing home from 7th grade through my senior year of high school. Much of that was in the Alzheimer's unit. Here are some experiences:

• Alzheimer's patients get scared and angry. Many times they realize they're not remembering things they should. They'll take it out on you. You need to not get frustrated in their presence, because it will not help anything and will exacerbate the situation
• Some things are heartbreaking, but there is also some sweetness in it. For instance, I was helping some low-functioning patients with coloring books. One woman colored a dog, she did a great job coloring it in various shades of blue. I think she must have been an artist. Every shade was deliberate, and it was probably the best coloring book dog I've ever seen. Shortly after she finished, she was staring at another page to color, and I'd come back and asked if she needed any help. She said, "well, I want to do this, but I just don't have any ideas! This person did a beautiful job though!" as she pointed at her blue dog. 15 minutes later, she was coloring whatever else it was, in a normal color, and said "Look at that - a blue dog! who ever heard of a blue dog!" It was sweet, beautiful, silly, and heartbreaking all at once. 
• It is an experience that can be very rewarding for you. It will not be easy. And it will not be fun, most of the time. But if you look at it through the right lens, it is rewarding.
• Get her estate in order. NOW. And put any animosity that may happen from it to bed (I don't think you'll have an issue with this)
• I'm of the opinion that Alzheimer's doesn't kill. It just seeps life until there is nothing left. There is a difference. This is much worse. 

Good luck. You don't seem like the support group guy, but it may help to find one. 

Lots of good info here. Elder care attorney, hospice--both essential, and don't wait. Contact them now. They'll put you on the paths where you need to be, so no reason to grit it out alone for longer.

Other than that, if you can, yes, take the sweetness where it comes. This will probably mean you join your mom where she is, in a conversation and place that is a little removed from time and reality. Be there with her, and you will still get to, you know, be there with her. I know the fear is that it's not real if it's not right, but you can still enjoy spending time with her if you let go the idea that she has to know who/what/where/when in order to share with you.

I spent a very pleasant afternoon with my mom once--admiring the place we were, accepting her opinion of me as a visitor... sure, we were in her home and I was her daughter, but it was still nice. I loved her enough to appreciate her company even though she didn't know where she was or who I was, understanding she had done the same for me when I was a baby.

Margie

Thank you for the advice.

I don't think elder care attorneys are a thing in Canada. I looked it up and there are none in my area only one in her city of half a million, and their focus seemed to be people that were institutionalized, or otherwise couldn't get out. I have an excellent resource for that kind of thing so I will ask him - but that's something I hadn't considered, so thanks for that. I already have power of attorney over her investments and I'm joint on her day to day accounts. At this point I'm making all of her non-trivial money decisions and she's quite relieved to have that off her back as she saw it as a burden. Speaking with her today she told me she's having money problems. She keeps taking money out of the bank, then stashing it and forgetting where she's put it. Then when she cleans up she finds all these stacks of bills everywhere and doesn't know what to do with them. So while she understands what's going on, she hasn't lost her sense of humour. Unfortunately when I asked how much she said she has no idea. Counting it was more than she was capable of, at least at the time.

Her estate is in order. She only started working when her and my Dad split, at 40, and worked in the funeral business. She hustled, and did very well at it, but also knows and understands the system, the process and the problems. We have no issues there.

I'm going to look into all the options now while I'm off work and have the time, and I mentioned to Mrs. P last night that I'd really like to get them in assisted living sooner than later. But my concern is with my stepdad's side of the family. It's only a daughter, but from what I understand, she may make things difficult.  I'd really like to speak with her, but I'm afraid it might start a huge, ugly fight. Neither of them need that, and I don't want to get stuck in the middle. 

One of the things that scares the hell out of me is thinking she may become one of those scared and angry people, not knowing who I am and being suspicious of my motives. That may very well happen, but thus far she's totally aware of what's going on and extremely happy that I'm there to help. I hope it doesn't come down to that but I'm aware that it may and probably will.

Support groups? Good call.

I went to one once and came away feeling bad for those poor alcoholic fathers that had to deal with those horrible, whiny kids. No wonder they drank

Please, keep the advice coming. This is all new to me and I appreciate it

In reply to Mr. Peabody :

My father went through this with his mother, in Canada. Start getting things in order for the long term care she will absolutely need. Someone, not your stepfather at his age, needs to have power of attorney for medical and financial issues. My grandmother stopped knowing each of us in the reverse order of our births. First her grandchildren , then my mother and finally my father. Watch for what she's eating, mark the food. I'd ask Grandma what she had for lunch and I would get an answer, but marking the food revealed that she had eaten something two days prior. I was the first to notice she was losing weight and that led my parents to start checking the fridge daily. Your mother may become pretty adept at faking things to cover for the memory loss that she may realize herself. The previous point about Alzheimers sufferers turning scared and angry happened in my grandmother's case , and it's terribly disheartening when someone you love turns on you. Just remember it's not her anymore. I don't envy you or her, Alzheimers is a crappy way for a life to take a turn.

Edit: If Mom is taking money out and misplacing it , then it's time for you to have complete control of the bank account on her behalf. Some unscrupulous bastard befriended my grandmother and made off with several thousand dollars in short order, before Dad got her to sign everything over to his control.

My dad has it. Went from driving to vegetable in two years. After the frustrated angry stage where they know something is wrong and feel powerless is over its easier. No comprehension at all after that and it's just a matter of keeping him comfortable. We have a great care home where he gets his own room and and lots of good help. He actually gets regular massages because he appears to like them. Expensive though.  But I would not recommend looking after him at home if possible. It is a monumental task.

The other thing to be ready for is memories that aren't recent. She'll likely start reliving things that happened decades ago and you'll be standing there wondering what's going on. I walked in to visit my grandmother and found her sitting in her sun porch crying. When I asked what was wrong  I got "Olive died this morning". I phoned my father and asked who Olive is and he told me it was Grandma's sister who had died in 1925, but to her it was today. Then you have to treat them as if it's a very real event regardless.

Where to even start? 
 

I can echo everyone else; it is a horrible disease.  My mother started having mild cognitive problems over 8 years ago. It started with her having a hard time keeping up with conversations. Then it progressed  to forgetting how to make dishes that she had made her hole life. More accurately, she could not keep the ingredients in order or remember which step she was on when cooking. As it progressed, she put herself and my dad in the emergency room with food poisoning several times. 

She started leaving stuff at the store and getting lost.  At that point,  we took her keys, and she really lost it. I tried to bring in some home health care givers to help with her medications and give dad a break. Unfortunately, I was not able to convince my parents to do that. Honestly, I think the disease was too far along for it to matter by that point. 

Not too long after that, the sundowners went off the charts one weekend, luckily my wife and I were there to intervene.  I called 911 to get an ambulance and had her medicated in the ER. It was a sobering night. The ER doctor was the most honest person that I have ever had to pleasure to speak with in a long time. To paraphrase, there is no help for this; it's going to get worse; get her placed as quickly as possible. 

One thing that is really important to understand about dementia is that it is not just memory loss; it is also the loss of the boundaries between memories.  Mom mixed memories of her parents' divorce with her current situation. Her father was an alcoholic from what I understand, and her parents had some real knock down, drag out fights when she was a kid.  She thought that my father and her were divorcing and transferred all of that angst to him.  It was really hard on my dad, physically and emotionally. Caring for her had been pretty consuming for him up until that point. It was very sad to see a 50+ year marriage evaporate. 

After that episode, I brought in home health, 24 hours a day. Mom was a flight risk and was not pleasant to be around at all. At first, I was naive enough to think we would get her medicine balanced out and things would settle down. After a few weeks, it became clear that the situation was not tenable in the home. The ER doctor had nailed the situation. She would call me at work to say that she wanted to go home. She was already at home!! Then I found out that she was calling lawyers! I quickly realized that the home health deal wasn't going to work. Dementia patients are a danger to themselves and others at this stage. They can still operate a car or truck, sign a check, get money out of an ATM, or call a lawyer, but they have no concept of reality. They have no idea what they are doing and are just running on hazy recollections of old memories, muscle memory, and habit. The home health attendants just weren't attentive enough to keep her off the phone much less prevent her from doing anything more dangerous.

 It took about a month to transition her to a memory care unit. Over the past few years, we have progressed from home health to memory care to hospice to nursing home with several hospital visits in between.

It has been a long, tough road. I feel for anyone who has to face this with a family member. 

Just an update, and thanks again for the advice.

Mom started taking something for the cognitive impairment about a month ago. When I spoke with the specialist he told me it's no wonder drug, and while some people see a marked improvement, about half will not get any better, nor any worse, and about as many that see an improvement see nothing at all. I was hoping she would at least be in the second group and not in the last. I don't want to seem too encouraged, and maybe it has more to do with the nice weather and getting out of the house, but she's significantly better than she was. When I speak with her on the phone now I hear her normal voice and she sounds happy and enthusiastic, not slow, depressed, and struggling to find words. It's a big improvement and we're all thrilled with it, her especially.

On the organizational stuff, I set up an appointment for both of us with her lawyer and that went very well. We reviewed everything we've already done and completed a few things he recommended. He actually said that we're way ahead of the game now, something he rarely sees in these situations. So thanks for that advice. I am going to start looking into the long term care and hospice options soon.

But for now it's really nice to see her acting like her old self, and we're going to enjoy it while we can

BTW, I watched those documentaries and they were very good.

In reply to Mr. Peabody :

I would suggest you watch her finances very carefully. A married couple in a car club I am a member of the husband started to get it and the wife left him with a cell phone and access to their investment accounts so he would still have a little bit of control. The next time she checked the accounts $150,000 had been moved to the Bahamas 

My grandmother. 

She is an excellent conversationalist and is quick witted. This allowed her to cover things up and even fill in her own gaps during a conversation. My grandfather was able to carry most else with the help of a calendar. Point being, no one really thought there was much or any issue for a long time, and then when my grandfather died it seemed like she went downhill fast. So that is how it sneaks up. 

Looking back, my father and aunts/uncles have identified some earlier signs. 1. she quietly stopped playing bridge with her crew (she would still go and chat, but just wouldn't actually play). 2. A daily vitamin taker most of her life, she started struggling - she also suddenly started eating whole packages of cookies in a day. She simply didn't remember if she had already had one that day or not. 3. She would get lost on bike rides around the neighborhood (but again, always covered up by 'running into' a friend or neighbor and then sitting and chatting a while before calling for a ride home). 

The other thing to remember is that there is no 'DIY' for this. You can't use a calendar because you won't remember which day it is. You won't even reliably remember if you already crossed off today or not. My father tried pretty hard to find solutions to help her continue to live on her own but it really just isn't possible. 

It's torture for the family. I'm pretty sure it's torture for the patient. You have my sympathies.

Related to what Robbie said, this is why I recommend people get into Independent/Assisted living/Nursing and hospice facilities sooner than is expected. I've known a lot of people who fought it. I've known nobody that didn't improve in physical and mental health afterwards. 3 squares a day, with friends, and caretakers however intense is necessary for the situation. Especially if there is one in the same neighborhood or with friends already there.

Mr. Peabody said:

... I am going to start looking into the long term care and hospice options soon.

Maybe im being overzealous but I read what you wrote above as...

1. Long term facilities
2. Hospice facilities 

I wrote earlier that you should reach out to a Hospice organization soon to see what they offer and what they can do. I just don't want you to think of Hospice as a place. It is an organization and one of the things they can do is provide in-home services, if that meets your situation.

Hospice deals with the assisted living facilities too.  I expect they will have a lot of insight on good/bad places. 

Also, more than one Hospice organization might service your area. One might have more funding or a bigger staff allowing them to "do more", so, shop/ask around. 

In reply to John Welsh :

That’s not exactly what I meant but Hospice is both

Hospice care in the United States is largely defined by the practices of the Medicare system and other health insurance providers, which cover inpatient or at home hospice care for patients with terminal diseases who are estimated to live six months or less. Hospice care under the Medicare Hospice Benefit requires documentation from two physicians estimating a person has less than six months to live if the disease follows its usual course. Hospice benefits include access to a multidisciplinary treatment team specialized in end of life care and can be accessed in the home, long term care facility or the hospital.[1]

Outside the United States, the term tends to be primarily associated with the particular buildings or institutions that specialize in such care. Such institutions may similarly provide care mostly in an end-of-life setting, but they may also be available for patients with other palliative care needs. Hospice care includes assistance for patients' families to help them cope with what is happening and provide care and support to keep the patient at home.[2]

My Dad has in-home hospice. It was a Godsend. I can't recommend it enough. 

It's been a busy year of looking after Mom and Stepdad.

TL:DR Mom is OK and transitioning to a home. The system is a system and it's negotiation is a learned process. I mostly wrote this out for it's therapeutic value.

She's deteriorated to the point now where she's no longer capable of looking after herself, and some days needs 24 hour care. I can't do that, and Stepdad's not interested.  But in that year I've spent a lot of time speaking with her doctors, and dealing with the (health care system) care coordinators, Alzheimer's society, and various other groups and agencies we are directed to for help. And to be honest, with the exception of one Doctor, they've been very little help thus far. They arrange meetings, make recommendations and write up nice reports, that are mostly a waste of our time and medical system resources. One of the nurses that came out to do an assessment on Mom quietly gave us a (unofficial) recommendation of a private care service that acts as a broker between people in need and freelance PSW's, and I hired a girl through them for three days a week.  She was very good, and a big help to everybody.

In the last year there were times when I would get the call, I'm having a bad day, I need to talk to you, can you come down? And then from Stepdad, your Mom is acting up, you need to come here and do something. She started to get violent, throwing dishes, hitting Stepdad, and breaking stuff around the house. I would have to intervene, could always calm her down, then go home. As those episodes started to get closer and closer together, I was trying to rely more and more on the care coordinators to further our case and transition Mom into the long term care home that was inevitable. They were useless, except for one new, young care coordinator that was assigned to our case, who explained on our first phone call how the system really works. Nothing is going to happen until your Mom is in a crisis situation, and is in immediate danger. At that point your case will be expedited and you will get bumped up the waiting list and into a long term care home at the first opening.

The next day I got a call from the original care coordinator telling me that the other girl was new and didn't really understand how things worked, and should not have said what she did. I never heard from her again, but found out later that she was letting me in on a little secret. As long as somebody was willing to pick up the pieces, they won't do anything.

So a few months ago the phone calls started to get a lot closer together. Instead of one a month, or the occasional couple a month it was once a week, then two a week, and her condition each time was getting worse. You need to do something everybody was telling me. I'm trying, do you think I like getting calls while I'm in the middle of something, dropping everything and  rushing to Mom's house? Easy for you to say.

One Saturday morning I was at work and got a call from her neighbour. Your Mom's wandering around and doesn't know where her house is. She thinks our house is her's and doesn't recognize your Stepdad. She also doesn't recognize her own clothing and is trying to get undressed in our driveway. I left work and went straight there. Like usual, I spent the day with her, calmed her down, and when I left she had a pretty good handle on what was going on and was rational again. I thanked the neighbour, explained to her that I know they have their own family and life, and  not to make this their problem. If there's ever a next time and they can't reach me, call 911. I went home, ate and went to bed because I had to be up at 4:30 and it had been a long day. When I got up in the middle of the night to pee, I could see the light flashing on the home phone. I didn't want to listen to the message. I really didn't want to listen to the message. I listened to the message. Mom didn't recognize Stepdad and in trying to kick him out of her house was attempting to do so by pushing him down the stairs. The neighbour heard the noise and called 911. They couldn't reach me (the message) and took her to the hospital for observation, as they thought she was not safe in the home.

So here we are, a few weeks later, and Mom is still in hospital. She is getting excellent care, good sleep, good nutrition and more importantly, her medication regularly (I was struggling with that), and regular mental stimulation from the nurses and PSW's in the ward. They tell me the process now is that she will stay there for observation to determine her condition and mood, and the correct type of facility she can go to long term. She is no longer having the violent episodes, and while she doesn't understand all the details of what's happening, she is aware that she has cognitive impairment, can no longer look after herself, and is going to a home where she will get 24hr care. She needs to be reminded that she's not going home, is not happy about it, but eventually comes around and accepts it. The main thing is, she's safe, she's reasonably happy and content. It's all we can ask for.

You should try being on the other side, ems rolls into the ER with a known dementia pt for "altered mental status", when there isn't a health related issue to admit related to dementia/Alzheimer's. Most facilities will require at least a 3 day stay before you can be placed into a long term facility. After that, it can still be weeks or months to get placed because with most "memory care" units because the pts already in that facility can linger on for a long time in a near vegetative state because of families unwillingness to let go and the facility themselves are still getting paid. Sorry for the cynical nature but it's reality.

In reply to Peabody :

I'm glad her situation is stabilizing, if not improving.  Thanks for sharing this update.  It's a terrible process to watch, let alone go through.  You have my sympathy and hope that it goes as well as it can for whatever time is left.

We lost my FIL to dementia 5 or 6 years ago in his early 80s.  His second wife (I refuse to call her a stepmother) took enough physical care of him that we didn't have to handle the day-to-day stuff.  However, it was heartbreaking to see his decline.

Pops is heading down a similar fate. I feel for you.  He's still on his own, but he has qualified for a long-term care facility, and is now in the queue for a bed. He's not at the "OMG, he needs round-the-clock care" yet, but yeah - stressful, eh?!