New Here & Need to vent - Mom has Alzheimer's and Dad is stubborn...

jf88

Hi Everyone - I am so happy to find this community as I am definitely struggling with many things! I mostly just need to share and vent and I appreciate the space to do so. Here goes. My parents (married 60 years) live together in a 55+ community (independent - no outside help except family) about 30 minutes from me. My dad (86) is pretty healthy and very stubborn and independent - still drives, plays golf, etc. My mom (82) was diagnosed with Alzheimer's several years ago but has started going downhill more rapidly the last few months. My dad started in denial but now can't really NOT notice that mom has trouble naming items, has household accidents (spills, burns, etc.), has no short-term memory, imagines things like leaky ceilings and her brother visiting, tries to wear the same clothes every day, etc. She never stops talking or asking the same questions and is exhausting on many levels. She also knows that she's not herself and gets angry a lot - refuses to go places, see people, etc., even though she is physically capable.

Currently I stay with Mom one day a week so Dad can get out of the house, but he's unwilling to get additional help even though he has insurance to do so, because "Mom doesn't want anyone else." My sister shares some of the load with me but she has a full-time job and I don't so I feel like I should do more. I have my own family (husband and two boys - one still lives at home) plus pets and other responsibilities, plus I honestly get resentful that Dad sees me as his only helper when I'm not. So for now my one day a week is what is working.

And now Dad's internalization of all this (plus some residual denial) is resulting in him not sleeping and having what I would call panic attacks that he blames on other things. He refuses to believe he can't cope with what's happening and he comes from a long line of "if we don't acknowledge it, it doesn't exist." Meanwhile he's taken several ER trips (often on holidays... coincidence? I think not!) and been told he's physically fine.

So what next? I know there are no easy answers... Should I just take the reins and hire home care to help out when I'm not around? Or do I let my dad continue to take the lead since he's been my rock my entire life and is currently willing to take the brunt of Mom's condition? My sister is supportive but we're both sort of making it up as we go along.

I will say that Thanksgiving (I'll spare details but it was bad all around) seemed to give my dad pause, and he may be starting to understand that he's way more stressed out than he admits. I will also say that the days I take care of Mom are beyond difficult for me so I can only imagine what he deals with.

Those are the basics... there's also guilt, uncertainty, and all the other issues I'm sure you all know; but that's a start. Thanks for listening!

M1

Welcome to the forum. Basic question that is going to matter: do you have durable power of attorney for either of your parents for finances and healthcare? ? Does your father hold it for your mother? This is going to matter. With both of them in their 80's you probably need to have it for both of them, if you don't, you are going to be limited in how much you can do (you can't force him to accept home health, for example). Highly possible that your dad is having his own cognitive shifts that limit his insight. A certified elder law attorney can help you get the legal matters sorted out (look at nelf.org).

It sounds like their days in independent living may be numbered, but again there is going to be little you can do without power of attorney. Convincing your dad to move voluntarily is probably a long shot. I'm sorry it's so difficult.

jfkoc

Often you can find the "win,win" situation.

Having someone coming to the house would be a good thing for your mother. It will give her someone to socialize with. They will give her their full attention as well as take her on possible outings.

1. It will give your father a brake from caregiver to husband.
2. It will lengthen the time they can remain independent.
3. Tell your mother she is helping out someone who needs a job.

It really is all in the approach and if your father thinks it will help his wife I bet he will be onboard.

jf88

https://alzconnected.org/discussion/comment/189762#Comment_189762

Thanks for the ideas - I do have durable POA for both parents and my sister is backup. My dad currently has medical POA for my mom and I am the backup. My dad (retired engineer) is very organized and pragmatic, which has its upsides! I am authorized on their safe deposit box and I have access to all accounts, passwords, etc. Calling my dad's attorney is probably a good idea - I know my dad just recently updated all the wills and paperwork, etc., so it would be good for me to talk directly to him.

Quilting brings calm

Your dad will allow you to be the caregiver as long as you allow yourself to be. You might try the approach of telling him that you ( meaning you, not him) cannot come to help as often as you have been due to your own family responsibilities and your own health. Mom help more than once a week, and he needs to get out of the house more than once a week. So, in order for you to heal, he needs to hire help or to temporarily move mom to AL. That since you have power of attorney, you will be glad to make the phone calls to get an agency to send someone out. That it’s common for people like your mom to want to stay home and not go out because they feel more insecure and panicky out in public

I would suggest that you also start researching ALs or MCs in the area. Your mom is farther along that you might think as some of the behaviors you mention begin in stage 5.

Emily 123

Hi jf88,

If your dad's an engineer, he'll want facts to understand what's happening. But it might be kinder, and easier to manage your mom, if you both don't point out her behaviors to her. She may have anosognosia-the inability to recognize that she's being affected, so she's unlikely to understand or believe it when someone tries to give her examples of her behaviors. What will work well is to learn about the disease, how it's affecting her perceptions, and how to interact with her to help keep her anxiety level down. Anxiety tends to exacerbate all the dementia behaviors. So agree with her when you can, and work around her in the background.

If your dad can accept that there are issues, he might find some excellent support over in the spouse forum--he will see that he's not alone, and that others have also had their hands full trying to support their spouse. It does sound like your mom's needs have outstripped what you & your dad can supply. How could they not? The disease requires 24/7 vigilance.

I love links, & found all these helpful...maybe you'll see something you can share with him...

Good books here:

https://alzconnected.org/discussion/65171/books-about-alzheimers-disease

I found these pdf's and Youtube videos helpful.

Understanding the Dementia Experience: 

https://www.smashwords.com/books/view/210580

Tam Cummings assessment tools/AD checklist

https://tala.org/wp-content/uploads/2019/04/Tam-Cummings-LLC-Handouts.pdf

Tam Cummings-Stages: https://www.youtube.com/watch?v=tansVVDM0fE

Teepa-10 early: https://www.youtube.com/watch?v=pqmqC-702Yg

Teepa-multiple videos: https://www.youtube.com/playlist?list=PL2E2lPBsUeBjA1Utglo8q6yANAijEf8cX

5 losses: https://www.youtube.com/watch?v=awBm4S9NwJ0

Anosognosia https://www.youtube.com/watch?v=5nw3YUDQJuY

Careblazers-How To Convince Someone With Dementia They Need Help: https://www.youtube.com/watch?v=ncKhXQtnyfI

Careblazers-5 mistakes to avoid: https://www.youtube.com/watch?v=rO50pVUOlbE

Dementia/Driving: https://www.youtube.com/watch?v=B3x5nQ7oB98

Moderate stage: https://www.youtube.com/watch?v=6cZTgG6kDjs

Stage 4: https://www.youtube.com/watch?v=coiZbpyvTNg

Stage 3: https://www.youtube.com/watch?v=TIkTO4d8YyI

Talking to a person w/ dementia. https://www.youtube.com/watch?v=ilickabmjww

Talking to a parent: https://www.youtube.com/watch?v=oiUpztj2DkQ

Stepping Into Dementia’s Reality: Advice From Teepa Snow | Brain Talks | Being Patient:  https://www.youtube.com/watch?v=EOCZInnLQd0

Teepa Bathing tips:  https://www.youtube.com/watch?v=iKT9YIVPREE

Vicky Bathing Tips: https://www.youtube.com/watch?v=iu-O2KtgMWY

OT discusses changes: https://www.youtube.com/watch?v=zkKi9_-tYbQ

MC or Nsg home: https://www.youtube.com/watch?v=Cetf0Q566Hc

Adv dir. https://www.youtube.com/watch?v=ii73c8k63Ag

MN Chickadee

What worked for my family with similar struggles was a heart to heart. A couple times we were at turning points in mom's Alz journey and I would sit dad down and tell him I was saying it all because I loved him and was worried about him. I would lay out the facts for him to fully consider (mom's behaviors, lack of sleep etc) and remind him that it wasn't going to get better and that he was putting his own health at risk as well as the wellbeing of me and my kids because her care would fall on me if something happened to him. I would tell him of the studies that show that something like 20% of caregivers die before their PWD and that doubles for people over 70 years old doing primary caregiving because that is just how stressful it is on our mental and physical health. And that he wouldn't be any good for her if he is hospitalized or dead. Sometimes he was so entrenched in the day to day struggles and so accustomed to living in total crazy town that he would forget it wasn't normal or sustainable or see how bad it was until prompted to actually look at it. I would come with the research and leg work done (for example, vetting and getting on waitlists at facilities, interviewing home health aides, a day care chosen and ready to enroll in etc.) He didn't have the bandwidth for anything extra like that. Once I decided to just take the reins and steer a bit he let me because this is what allowed him to let go of his denial. I know everyone's family dynamics are different. I hope you can find an approach to make headway. You will definitely need therapeutic fibs for whatever changes for mom in the end.

If nothing works you will have to wait for a crisis I guess. Many folks do. Often wandering, a fall or injury, or the inevitable incontinence that dementia brings suddenly jump start these changes. If it were me I would privately tour and get on waitlists for both Assisted living and memory care and choose what Skilled Nursing Facility you would use if necessary. That way you have options for either or both of them when the stuff hits the fan and won't have to do that work under immense stress. Good luck and let us know how things go.

Regina312

Welcome. You have found the perfect place to share your thoughts, vent as needed and learn how to cope. My Mom passed from Alzheimer's in 2015, but I would not have made it through without the support from everyone here and my leaders and resources from the Alzheimer's Association. Always listen to your gut. If you feel you need help, or something isn't quite right, or you are having more concerns than usual, then you know it's time to seek out assistance. Your dad is a proud man. Asking for help is the hardest thing anyone can do. It makes him feel like he is failing your Mom. Exploring your options is definitely a good start. Some home care will definitely make life a bit easier for all of you. There will be many challenges, many surprises and many little white lies told to help get you through. You will learn the tricks that work for you to help find your balance. Wishing you all the best.