How to help my husband?

MarLee92

New here.  My MIL was diagnosed with ALZ in August, 2021.  However, I have suspected and believed that she really should have been diagnosed in 2018.  Her children wanted to believe the PCP so much, they followed him when he said she would be okay if they could get her sleep figured out.  I never believed  that and had to really fight to finally get her to a neurologist and tested.  The neurologist was very specific about getting her on a daily schedule and having her recording it.  Also, for them to alternate spending days with her to have dinner, to be sure she was eating okay (she isn't).  My MIL still lives in her own home, with no care besides her children (4 adults) and she still drives, despite coming up missing and lost at least 2 times (that we know of).  What I want advice on is how do I help my husband and his sibs to realize this is the best it's going to get?  To take the doctor seriously, do what is asked, and to take her keys away!  The best example I can give is when my husband took my MIL recently out for dinner.  She decided she wanted pizza, but was having trouble what she wanted on it.  Instead of just saying to her "mom you usually like 1, 2, and 3" he just started listing all the items she could have. Then when the waitress came, he left it up to my MIL to order, which of course she couldn't do. When he got home, my husband was so irritated by how she acted.  I said, you do realize she can't make a decision like that? You can't give her all those choices?  He just said "I know" and walked off.  The rest of my husband's sibs are the same way ("how many times do we have to tell her to take her phone with her?").  I'm open to any suggestions.  I'm retired and have my own mom who suffered a stroke 2 1/2 years ago.  She suffers from slight cognitive impairment and some loss of movement on her right side.  I have days I just want to tell my husband they're on their own, but I feel if I don't keep track of things, nobody else will. I love my MIL too much to do that.

SusanB-dil

Welcome to 'here'.     As I have seen - glad this is here, but the club nobody wants to be in...

I really feel for you that the others are in such denial. It took a bit for my DH to come to the realization for his mom, too, but the circumstances not nearly as dire.  I started pointing out some things that were 'off' and totally out of character, and he finally came to the realization of it all.  She was not living alone, but the 'e2' that was with her was using her for money. When we found that out, 'e2' was kicked out.  However, in the meantime, we did manage to 'lose' her car keys. She did get lost twice, and did finally admit that one time she came to an intersection and forgot what to do. ok, time is up, no more driving.  We had the same issue with the cellphone in that she would never carry it. 

Would there be any way your DH would be convinced if you pointed things out? I know you've tried, but maybe could there be any other way? Maybe specifics, such as inability to order from a menu (big red flag), show him where it specifies exactly that?  Especially now that she has been officially  diagnosed?  I understand the denial.  Nobody wants 'this' for the people we love! Would he believe the neuro-doctor if the doctor spoke to him directly?  (I hope he is 'named' on her HIPAA papers)

On a side note - does she have POA in place to one of her children?  This is urgent and needs to be taken care of ASAP if not already.  This is part of 'getting affairs in order'.

I am sure others would have more suggestions, and maybe better suggestions, and do try the 'solutions' tab above with lots of helpful info.  but again, welcome - you are not alone.

jfkoc

You are in  a hard position. A good approach might be to "share" written information.

This are my favorites;

I'm Still Here: A New Philosophy of Alzheimer's Care Paperback by John Zeisel

Thoughtful Dementia Care: Understanding the dementia experience. Jennifer Ghent-Fuller.

 2002 edition is available online in pdf format for free.

MarLee92

Thank you for your reply.  Yes, we have the HIPPA set up (it includes me, which is really helpful).  I also got her, with the help of our CPA, to sign a form that any of her children can talk to the CPA about her taxes.  I am so glad we did this over a year ago!  The POA has been set up, so that is also done.

I am finding the more I point out, the more my husband seems to resist.  I pointed out this site to him and told him I was joining.  He asked if anyone would know who I was (I took that to be he was worried someone would recognize me).  My husband and his SIBS were going to finally meet and try to set up a schedule. The main problem is her eating right now.  I went through various websites and printed out paragraphs that I thought related to my MIL best.  He told the SIBS at the meeting they were there, and nobody took one.  I also set up a food log for her to keep on a daily basis and they are trying to use that - yeah!  My MIL has her next appointment with her neurologist in November.  I contacted her and asked if she had any ideas.  She said because of COVID, she could only have 2 of the siblings there, but she would set up Zoom for the rest.  In the appointment when her diagnosis was given, I sent the neurologist a letter on my mother's background (what her hobbies used to be, favorite places to go) before the appointment and also told the neurologist she was going to have to be extremely specific with the SIBS to get them to change.  The neurologist was very good at hitting all those points.  I am going to try to do something the same for the November appt.  I do understand how my husband is feeling.  I've looked ahead to her next stage (the neurologist said she is probably at 3 out of 5) and I can hardly read what's coming.  I think it will be a long time, possibly never, before my husband reads it.  You are right, this is not a good club to be in, but I'm very thankful it is here.

MarLee92

Thank you for your reply.  I have printed out so much information for my husband and his SIBS, and most of it remains unread.  Sometimes I'll print it out and just read the "highlights" to him.  I think he is listening, but he really doesn't say anything.  I really believe that all the SIBS feel that they can somehow make her 'better' for lack of a more appropriate word.  I just hate that they could be trying to make memories with her and instead seem to just want to scold her for not doing what they think she should.  I have seen my MIL be interacting with me on something and one of her children will talk to her with a certain tone and she just shuts down.

Space within

Hello. It's so great you are here.  

Do you live close by to your MIL?  It took close to a solid year for my family to come to gips with  my Mom's health. 

 Naturally we all want each other to remain healthy.  Depending on family dynamics we are so sonditioned to being a certain way and functioning in our roles. I am embarassed, loooking back, on how long it me to get over myself so I could show up for my LO in the best possible way.  

Could you possibly present your concern to your husband with specifics about your MIL and then shortly after visit your MIL.( all together).?    Carry on normal conversation throwing in topics or situations where your MIL might then give away this concerns ( that something is off) for your husband to witness.     

My LO had FTD which first took away her vocabulary and word recall. So during normal conversation she fill in sentences with "that one thing" or "on that one street" .  She was still able to function, so to speak and possibly hid her loss of memory, at the beginning.    

My heart goes out to you. You are doing all you can, right? That's all you can do.   The disease is what it is. Sending you all, courage and love to be open to what is happening.       

My LO got to a point where she was hesitate to drive but was also in a position where she had other people around her most of the time that could drive places. This is such a huge safety issue. 

I can understand your husband's fear about people knowing who you are on this board. I was and am still to this day, like that. It makes me laugh in a way.(i don't know why I am like this. I think I have trust issues. ha ha.)   We are all in the same storm, to a degree, trying to get through. These boards have been so helpful for me. So much valuable information. 

Keep sharing your light *   

MarLee92

Yes, I do live close to my MIL. Actually all of her 4 children live within 15 minutes of her.  As far as your suggestion about pointing out things to my husband, I have been doing for almost 3 years, when I first suspected ALZ was happening.  My MIL loved to bake, and one day just stopped.  To this day I think something started on fire or she couldn't understand the recipe.  Every year a fresh homemade apple pie for each of her children (her specialty) and then she just stopped.  I pointed out at that time to my husband why she may have stopped.  When he asked her outright why she stopped, she just said "I'm old, I'm tired.  I don't feel like it anymore".  He thought that was reasonable and I was overreacting. It's almost the same 3 years later.  Yesterday, I thought maybe we had a little break thru.  My husband's SIB texted him and said she had been out for a walk with MIL and SIB had her dog with her.  My mother-in-law has always hated dogs and kept her distance.  Sib texted when they got done walking, MIL leaned over and gave the dog a hug goodbye and petted him. I was shocked! In reading text to me, my husband said "well if that doesn't tell you something is wrong, nothing will" and laughed.  I can't decide - was the laughing good?  He just went about his day right after that.....

MarLee92

Thank you, that made me smile.  When my husband and I first married, I didn't know if my MIL liked me much.  About 10 years later, my FIL was diagnosed with brain cancer.  It was some very hard months, but I gradually saw my MIL change in her feelings and reactions to me.  I've always felt bonded since then.