So, my mother probably has Alzheimer's

In My Humble Opinion
1

Mum is sixty-nine, and we’ve known she is having cognitive problems (memory and vocabulary) for about six or nine months, but we have recently realized she’s been concealing more worrying symptoms from us (wandering at night, inability to read, getting lost in her own neighbourhood). We’re in process waiting for a visit to a geriatric psychiatrist, and I’ve talked to our family doctor.
This is going to be so complicated. We have four children and the oldest is five and had diabetes. My dad is over eighty and has Parkinson’s, and Mum has bipolar in addition to the not-yet-diagnosed dementia, so we have some experience dealing with paranoia and mood swings. I’ve spent the last week talking to our doctor and a variety of family friends who have experience with dementia patients.

We’re going to talk to Mum about giving up driving and turning their financial affairs over to us. I also need power of attorney. She’s already agreed to have me or Mr. Lissar go with her to her appointments (instead of my dad, who is nearly deaf and getting physically fragile). That means trying to get childcare or having Mr. Lissar take days off work. We don’t have any other nearby family, but are trying to network with members of my parents’ church about support, and I’m looking up the Alzheimer’s society.

What am I not thinking of? What other coping strategies are there, what implications have I not thought of yet?

2

How safe is the house, physically speaking? Working smoke alarms and CO detectors? Fire extinguisher in the kitchen? Grab bars in the shower? Strong, well secured bannisters on both sides of the stairs? No throw rugs on the floor? Cords neatly coiled and secured out of the walkways? If you make these sorts of changes now, they won’t be so unsettling when she becomes more confused and physically frail (and it sounds like it would be a good thing for your dad, too.)

Get yourself added to her credit card and checking accounts, so you can review the statements and make sure scammers aren’t taking advantage of them. This is easier to do now while she’s still legally competent and can be active in the process.

Put a basket by the mailbox and see if you can get her to put her mail in there so you can “help” her go through it. Switch as many of her bills as possible to “paperless” billing and electronic payment so she doesn’t get confused and pay things three times or not at all.

Sign her up for one of those Identity Theft alert programs.

Get her a medical alert system, if she doesn’t have one already. There are plenty of good ones; we chose 5-Star Urgent Response for my mom, because it’s not limited to the house; it runs on cellphone service towers, not a base unit on her counter. I also like that I can sign on and locate her transponder doohicky at their website - if she gets confused and lost, I can find her, and if she loses the transponder (which she did yesterday, and she’s not even confused yet, just lost it like you lose your keys sometimes) I can at least tell her, “It’s somewhere in your house, not at the mall.” (She found it.)

When it’s time for home care, tell her doctor that you don’t want him to sign any orders with any companies unless you’ve talked to him first. Medicare fraud is rampant in home care, and my grandmother went through 5 home health companies in a year who got her to sign a bunch of papers (they don’t care who has PoA, nor does Medicare, apparently), billed Medicare and never went back to her home to provide care. Mom finally talked to her doctor, and he agreed not to authorize home care until she talked to him again and said, “Okay, we want to go with ABC Home Care, so you can sign their orders, but no one else, please.”

Investigate respite care or elder day care in her area. There will come a point somewhere between “I can call her once a day,” and “Mom needs round the clock skilled nursing,” where you are going to need a break. A good program of socialization and therapy makes it easier to allow yourself to take the breaks you need to take care of yourself, not to mention everyone else who needs you. Better to do the research now than to wait until you’re exhausted and can’t take it anymore. Your state or city’s Department of Aging or Human Services can help you out with this and other senior services (in my city, they also help with things like disabled/senior bus and medcar services, applying for Medicaid, charity based homemaker services, exterior ramps for disabled people and Meals on Wheels.)

Above all, hang in there. You’re not the only one in this situation. You may want to find a support group for yourself, while you’re at it.

3

Thanks. The worries about Medicare or similar are small- we live in Ontario and have health care coverage. If we switch her to paperless billing we’ll be immediately taking over their bill payments. My mother is just about capable of answering her email but is the opposite of internet savvy and my dad has never touched the computer. It wouldn’t be problem, necessarily- it would just mean that we would be taking over.

Their house is a mess in terms of safety. We have a close fried who is an OT and I might ask her to do a quick initial “Oh God that’s so dangerous!” walk through. There are homecare services provided through provincial health care- I need to find out about them.

The first un-fun steps involve trying to talk to her about the ways she needs help. She’s proud and intensely private. Plus becoming more paranoid.

4

Oh god, I’m so sorry. I’ve been through this now with two grandparents, one of whom I was extremely close to and who basically raised me.

My biggest advice to you is to get all of your ducks in a row, get her to sign off on whatever she needs to sign off on, etc., now. Don’t wait for her to come around or change her mind. Push now to get her to agree to the things you need her to agree to. As the disease progresses this will become more and more difficult, as she forgets things, has personality changes, or possibly even becomes combative. You already mentioned she is showing some paranoia.

Definitely, definitely seconding the advice to investigate elder care or respite care. And I know it might seem far away at this point, but I personally would also start looking at the Alzheimer’s-capable full-time facilities in the area. (I don’t know if “nursing home” is the appropriate term, but that’s the sort of thing I mean.) Our family waited far, far too long to get my grandmother into appropriate care. She was missing medications, had fallen a couple of times, etc. She’s in a very lovely place now where everyone goes and visits her on a weekly basis, and her physical health is visibly improved.

I also think the advice for a support group is good. This is a very, very difficult disease to cope with in loved ones.

5

One of the things about the paranoia is that we’re not sure whether it’s dementia or bipolar related. It’s a fun can of worms. There’s a small, self-pitying voice at the back of my head going, “Diabetes, Alzheimer’s, Parkinson’s, and my husband has ongoing depression. Oh God.” But I’m not giving in to it. Well, except for on bad up-all-night-with-twins or Gnat’s blood sugar problems days.

I will be looking for a support group, and we might start attending my parents’ church in order to form more connections- they’ve got a potential tonne of support there. And I need to find out if they can afford assisted living. So much to do.

6

I’m currently going through the same situation. My 76 yr old dad has Parkinson’s and dementia and my 71 yr old mom was just diagnosed with dementia - a complication of liver and kidney failure caused by congestive heart failure. Our new family motto has become “one day at a time” because truly that’s all I can manage. We’ve hired an in-home nurse and that’s helped tremendously.

The one thing that I can pass along that I’ve had several doctors and nurses tell me is that whatever personality traits a person has, they’re multiplied with dementia. So my dad, who is for the most part very easy-going, isn’t all that difficult to manage. My mother, on the otherhand, has always been stubborn and hard-headed. Those traits have only multiplied now that’s she’s ill. She’s incredibly combative and paranoid. Some adjustments to her medications have helped, but not completely.

I wish you all the best. Dealing with two sick parents at the same time is exhausting - especially when raising children of your own.

7

Do you have siblings? If they are far away, there is a whole mess of potential problems that need to be dealt with, I think. This is the kind of thing that can destroy the relationship between even well meaning siblings simply because the perspectives are so different when you are Right There vs somewhere else, and both sides need to be aware of these pitfalls.

ETA: I am so sorry.

8

I don’t have siblings. Only child of elderly parents (I turned thirty-five today). And my mother only has one sister, who lives in Vancouver (we’re in Toronto).

It’s just me, and I have twenty month old twins, a three year old and a five year old. Life’s pretty chaotic without adding a whole new set of health problems. It’s going to be rough.

9

At least . . .and I mean this . . .you won’t be arguing with anyone else about major decisions or money. That sounds awful, but distant siblings can be a pain in the ass when they want and need to be involved, but because they don’t see the changing face of things, they are really in no position to get a vote in major choices . . . but of course they feel like they should.

I guess my only advice would be: bankrupt your mom before you bankrupt yourself, and start that process now. Unless health care is beyond amazing in Canada, there WILL be incredible additional expenses from this for a long time to come. Medical care may be covered, but you may well want to hire additional people to sit with her, or have cooked food delivered, or just a thousand little things that will make life more comfortable. I don’t know about Canada, but in the U.S., it would be pretty inevitable that this process would drain any but the most substantial estate before it was all over.

So don’t bankrupt yourself, too. For example: let your mom pay for childcare when you have to take her to the doctor (i.e., you pay for it with her money). It’s a totally legit expense for her to be paying, and something that will seriously add up over time. It’s that kind of thing that bankrupts the families of people that need tremendous care because you don’t want to charge your mom when you love her. But you have to try to protect your own financial future in all this.

10

You can take a look at some of the resources available at http://www.alzheimertoronto.org/. I know that Toronto Rehab and Baycrest both have Alzheimer’s programs.

11

Sorry that you’re dealing with all this. :frowning: My mom is in the late stages of early-onset Alzheimer’s and is in a nursing home. She is only 69. I recommend the book “The 36-Hour Day”. It explains a lot about different types of Alzheimer’s behaviors and how to deal with them, and also gives different options for caregiving.

It sounds like you’ve thought of a lot of the important stuff already (power of attorney, etc.). My only advice is that Alzheimer’s patients can be very intransigent, which makes it hard to care for them. You have to do it anyway, even if they fight you on it. Waiting only puts off the inevitable and can make things worse in the end. My mom refused medical help for a long time, and my dad went along with it. The end result was that she spent 3 weeks in a psych ward before being admitted to the nursing home.

12

I think we’re already seeing this. She’s so extremely worried and wary-looking now a lot of the time. General update- after three weeks of complicated hell I’ve got their Powers of Attorney for finance and care, and we are seeing a geriatric psychiatrist in a couple of weeks and a neurologist on Tuesday.

Our doctor thinks it’s possible it’s a brain tumor. Or Alzheimer’s. Whatever it is it’s progressing fast. When she signed the forms she would have misspelled her name if my husband hadn’t helped her. She doesn’t remember how to write numbers, and she can’t remember them. She’s also having early morning near-panic attacks with heavy paranoid anxiety.

My aunt has offered to fly in for a week or two to help if there are a lot of appointments. I think I’m going to take her up on it even if there aren’t a lot of doctor’s appointments because I still need to go with them to the lawyer to make sure I’m executor, go with them to the bank to get added to their accounts, and probably after the neurologist’s appointment there will be MRIs and CT scans. Oh, and I should see about Meals on Wheels or something similar. They’re losing weight.

We’ve had an outpouring of support from my parents’ church and from relatives. I just have to figure out how to harness it. I’m thinking about getting a part-time nanny and seeing if my parents can afford to pay for it- we can’t- but I need to have some flexibility in child care, and it’s harder to get that with drop-ins and Mr. Lissar can only take a limited number of days off work.

It’s going. Still lots to do, but it’s going.

13

Just WOW. :frowning:
I’m truly sorry for your troubles.
If you haven’t already, you might want to read thru this thread, as there are some excellent suggestions posted in it (and in this one, too).
(WhyNot deserves credit for some very good advice, in this thread and the one I linked to. I tip my hat to him, or her, as the case may be.)
FWIW and IMHO, you seem to have a firm grasp of the difficulties facing you and the necessary steps to help you cope with what is going on.
Sorry that I can’t offer anything more than ‘moral support’.
Good luck to you and yours in dealing with these trying times. :slight_smile:

14

Thanks. :slight_smile: The third sentence hit me hard- my dad is a former watch repairman/amateur jeweler/engraver/carpenter, and one thing we haven’t started thinking about yet is the total nightmare it will be cleaning out Dad’s three workrooms, all full of specialized equipment. Anyone need a rolling mill? Sigh.

We have a friend who’s a welder and silversmith, and between him and Dad we can probably identify everything, but how do we get rid of all of it? A lot of it is valuable! And there’s so much!

Oh, boy. I need a cup of tea. With whiskey in it.

15

When my little cousin had a brain tumor, his parent had a lot of help from friends etc. They used this website: http://www.lotsahelpinghands.com/ to organize the help. Basically, people signed to be part of the group and someone then made schedules, organized who did what etc etc. I was on the emailing list and thought it looked really useful.

I’m really sorry for your mom and whole family. :frowning:

16

That’s the kind of situation which calls for an estate sale, to let someone else deal with it. A good one will have contacts in the repairman/amateur jeweler/engraver/carpenter industry who will indeed be very interested in such equipment. You can find estate liquidators pretty easily on Google, but they should be checked out via the Canadian BBB, and do check their references and make sure you get agreements in writing.

My grandfather was much the same, only add machinist and glassblower to the list. The contents of his workshop ended up being valued at almost as much as the (modest) house itself! In the end, my mom and uncle decided not to sell the stuff, as my uncle wants it, but getting it valued helped them decide how to fairly split up the estate - he took the house and contents, she took the savings and investments and he paid her a little to even things out.

17

An estate sale is a good idea. Mr. Lissar says that Dad has started (very slowly) to purge, and in any case Mr. Lissar will want all the carpentry tools.

Today’s the neurologist’s appointment. Mum is very relieved that I am coming, and admitted she isn’t sure of the doctor’s name or the room number, because sometimes the things she writes down aren’t accurate. That really kill me- she’s very bright and has a Master’s in English Literature, and she can’t read or write reliably any more. I think my Dad might be coming, too, and that’s okay, but I’m the one who’s going to be asking questions and explaining things to Mum.

My aunt is probably flying in for two weeks in a little bit. I’m probably going to save the bank trips and things until she’s here, because it means a long stretch of reliable childcare and help with the housekeeping.

18

steadily pours the whisky into the tea

Good luck at the appointment, I hope you’ll have some answers soon. (Remember to bring notepad and pen to jot things down!)