Loading discussion content. Please wait...
Mom just diagnosed with Alzheimer's and I feel a little lost
Hey - I'm not really sure what I'm doing, but I think I need some help and am not really sure where to go or who to reach out to.
My mother was diagnosed with Alzheimer's earlier this month by her PCP. I went to the appointment with her for support, as we feared she may have Alzheimer's already (it took her father several years ago). The doctor put her on some medications, but they ended up not working out for her (they caused a syncopal episode).
My mom lives with my father about an hour away from me. I'm 33, married, and an only child. My mother is 69.
I guess... does anyone have resources or some kind of guidebook on how to deal with a parent having this disease? A book recommendation or.. anything? I know that's probably asking a lot, but I feel totally lost and alone here. I don't know when symptoms require intervention, what to look out for, and what steps to take as things progress.
The doctor didn't say if her symptoms were mild, moderate, severe, etc, but it sounds like maybe he should have? She seems coherent most of the time, but just does or says things that don't make sense now and then, so I'm hoping her case is still mild.
I'm getting worried about her hurting herself in her home, especially after Thanksgiving when she nearly burned herself in the kitchen. She gets very upset if the topic of Alzheimer's is brought up, the same thing with my father. I think they want to continue on like nothing is going on, but I feel we should be taking a more proactive approach on how to handle this?
For example, my father told me yesterday that my mom had had a couple checks bounce (she's in charge of their finances and that kind of thing NEVER happens). We know something needs to be done, but are just not sure what, and are trying to be very delicate with anything we do or say as to not upset her more.
Sorry if this is a bit rambly, I'm just a bit upset and confused after the holiday. Any insight is appreciated. I really don't know what to do.
How awful for you and your Mom to be dealing with this so young. It’s great that you are here and asking these questions at this point. Your actions now can avoid some future problems and make things smoother for Mom and family going forward.
You can access “diagnosis” from the alz.org link at the top of this page and compare it to what your Mom received from her PCP. At 69, I think many people would suggest your Mom get a comprehensive evaluation and diagnosis from a specialist. I would.
In addition to a doctor providing more info, you can also likely determine staging from reading descriptions. People often do not fit cleanly into one detailed stage but they can give you a general feel for where she is and whether she is mild, moderate, or severe (which may be adequate). There are a number of different scales for staging. Here’s one: https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
Very important to do now: Make sure she has a Durable Power of Attorney, one for finances and one for healthcare. If you wait, she may not be able to sign these documents legally in order to name someone to help her in the future (or now). It’s best to do this with a certified elder law attorney who can assess the whole situation and make other recommendations as needed (for instance, planning ahead on where the money will come from for her future care). Ideally, have a back-up person named if the first POA agent cannot serve for whatever reason. And I don’t recommend getting one that is “springing” if you can avoid it. Your Dad is likely on all her financial accounts which will also be helpful.
I may be biased, but based on what you’ve said and what I’ve experienced re: dementia & handling finances, I think your Mom should stop handling the finances with no oversight NOW. If your Dad doesn’t want to be in charge, see if your parents are open to adding you to the account. This is a big topic. I’ll just say that many people, including me, discovered financial horrors after the fact, that happened during the time period when they just suspected their parent was “slipping a little”. Now is the time to at the very least have someone monitor the finances and her actions very closely and regularly - and depending on what is revealed, possibly limiting or stopping her access to finances. Expect her to disagree and not think she has a problem. Additional diagnostic information from her doctor can also direct you in whether it’s appropriate for her to be in charge of finances, driving, cooking unsupervised, in the home unsupervised, etc. Pay attention to your gut and what you are noticing and your concerns. I think you are on the right track in realizing “she’s not safe” and it would be wonderful if you can keep her from starting a kitchen fire or losing a bunch of money or having the electricity turned off because she didn’t pay the bill.
Regarding HOW to make changes to your Mom’s level of independence with minimal upset: that’s another big topic with LOTS of good advice and experience available on this board. Learning to use "fiblets" and redirection made a huge difference for me and my Dad.
Others here have tons of great recommendations including books. Keep checking in!
P.S. There is a search feature on this site which is very helpful too. You can read lots of past posts on topics you want info about.
I am sorry you are joining our club, but it is a very good one for those in our circumstances. Here is a link to a wonderful post by Stephanie Z, with lots of info that helped me so much.
https://www.alzconnected.org/discussion.aspx?g=posts&t=2147523850 (just cut and paste it in your browser; I haven't learned how to insert live links here yet.)
I have found that learning as much as I can, and being proactive to just do the things that will protect my LO and our family is more important than trying to convince him, or gain agreement. He can't. I must. That's that. Wishing you all the best each day.
P.S. As the other poster said, finances can get way out of hand before you know it. Getting DPOA and switching to me managing the money did not occur for us until near foreclosure, and only a last minute bankruptcy filing saved our home. I had no clue. DH was not happy (understatement) but it was clear he was not able to continue handling important business matters so I found my way over, under, and around his protests that he was "fine" despite the diagnosis, and changed all the accounts and froze his credit to avert further disasters with overspending and depleting while ignoring our real bills.
Same with driving. Your LO, like mine, may have no awareness that they are impaired. It is called anosognosia. This makes it even more impossible to discuss, reason, or plan with my LO rationally, which is pretty much not possible with dementia anyway. So, rather than trying to convince him that his diagnosis is real and things are going wrong, I have been the one who had to learn and adjust, actually. After disabling the car (his longtime mechanic friend fixed it before I could clue him in), hiding the keys (a few times -- he found the extra and tried to order a 3rd from the dealer), I finally had to just disappear the car. Some things are in the "better safe than sorry" category and I have no regrets about taking quiet action now, before something terrible happens.
Now, we are taking each day as it comes, working on being safe, and finding as much time together and joy as we can. There is great experience openly shared here to help guide you. I wish you and your family the best.
As has been said many times by others here, one of the hardest things we caregivers with parents have to do is, become the parent. Your LOs brains no longer work right, it will be harder and harder for them to do things that need doing and/or should be done or that want to do. They do crazy stuff. You have to become the parent right now.
The Finances is a huge red flag. So many lose their money and property because their judgement is so impaired, and even if they seem ok sometimes. You or others must get control of the finances. There are tons of help about that on the boards.
A very helpful book, to me, is “My Two Elaines,” by a man who cared for his wife with dementia though late stage. I first thought it would be some sappy sad love story, but it is actually filled with helpful practical tips for caregivers and how to cope with your LO. It’s a paperback on Amazon, etc.
Another book is called “the 36 Hour Day,” also on Amazon. Not an easy read, more about the disease itself, but that’s info caregivers need to know.
My local Alzheimer’s Association provided me, free, with a pile of material. Some was so basic my DH was already past the point, but a lot was helpful. They can also provide lists of places where you can hire caregiver help, and lists of facilities. (No recs, the decision is up to you).
If you’re close, they will also meet with you to go over things. (Free) if you’re not close they have 800 number with counselors.
There is another long, maybe 30 pages printed, piece online and free. Called “Understanding the Dementia Experience,” by a woman with a hyphenated last name I can never remember. But if you google the title, it comes up pretty high. It’s one of the best, IMO.
Many people avoid using the term Alzheimer’s or dementia because it upsets their LOs. Most caregivers have better luck using the term “memory problems” instead. Or tell your mom something like you need experience with handling finances and it would help you. Or, she’s worked so hard, time for her to relax. Just don’t say “you made a mess and we’re tKing over.” That just causes more problems. (Remember, her rational brain is damaged, not working right). You learn to tell “fiblets” and half-answers to avoid upsets. You will have to be proactive in heading off potential problem areas, like finances, driving, getting lost, etc.
yes, sometimes the LO gets upset, like when they can’t drive. But your big role now is to keep them safe. You don’t let a toddler play in the highway, or mix up lighting fluid, just because he gets upset if not allowed. This is similar. They will try dangerous things, you must protect them even if they don’t like it. (And typically, they will quickly forget the upset).
Dementia and Alzheimer’s does not get better. It may plateau for a while, but then they start losing ground again. It does not get better.
A real life support group is great for getting tips on how to handle these problems. I first though of them as some kind of warm fuzzy “let’s share feelings” but it’s much more practical and useful; a great resource for finding the help you will almost certainly need.