How to talk to spouse caregiver about mom needing constant supervision?

ecsteinbach

Hello all! New to forum and I accidentally posted my question (and story) under someone else's topic - so I'm hoping by posting in more than one place I'll get some good advice.

I am the daughter (one of four surviving siblings) of my mom with Alzheimers. My 70 year old dad is the sole caregiver of my mom, and they live in the home I grew up in. My mom is in the middle stages of her disease, although I would classify her as "late-middle" (her last MMSE score this winter was 16). Thankfully, she can manage all of her ADLs (sometimes needing prompting) and has no issues with toileting. She hasn't wandered. She hasn't driven for several years. She is pretty much always confused, though pleasantly at this point. My sister is the only child who lives close to my parents, and I stayed with them for >1 week recently after my dad fell and broke his jaw. My sister and I both feel that my mom needs constant supervision at this point.

A little about my dad. First- my mom was the spitfire who made all the important decisions, and my dad was the breadwinner. He was never very empathetic, which was tough as my mom struggled with depression for many many years. My dad also retired almost exactly 1 year ago, and with COVID-19 pandemic, hasn't been able to travel and do the other things he wanted to do after retirement. When I was home, I saw he was very impatient with my mom. He didn't spend time with her exercising. He hasn't really cooked before and their diet is very questionable. He lets my mom leave chocolate around everywhere, and she has gained a lot of weight recently. Basically, he is not being a caregiver - which is fine, because not everyone was made to be one! However, he also does not think my mom needs constant supervision or that he needs help.

So that is my question - how do you convince your loved one, who cares for your parent with dementia, that he needs help? Or that my mom needs constant supervision? He keeps testing my mom - recently they went to the Mall of America to walk indoors, and while at a bookstore he left her alone. Thankfully she was fine and able to concentrate on what she was doing - but my sister and I think he's crazy for doing that! When my dad isn't around, my mom is a wreck, constantly asking where he is and what he's doing. She's talked about how she needs to "go home", meaning to Ohio where she grew up. She sometimes has days where she doesn't remember my dad (and asks what number husband is he? They've been married for 48 years). I just worry that waiting until she wanders off is too late, and we should be proactive now about getting help for them both.

Very interested to hear thoughts - and thank you in advance. This is already so difficult, but especially so living far away (I'm in NC, parents are in MN). I just wish my dad would accept that my mom needs more help than he can give.

Quilting brings calm

My Dad was(is) also in denial.  We take one steps forward with that and two steps backwards sometimes.  We had a couple health crises for Mom when they lived out of state over the course of about 18 months and the last one resulted in an emergency move back to our state and a hospital/rehab stay for my mom.  Followed by my getting them accepted into assisted living.  

I thought we had dad at a point then  that he understood Mom had issues, but it came to light that he refused to believe it.  He thinks that they could live on their own, or that at least he could if something happened to mom.  He also kept denying moms diagnosis.  I had their long time PCP  talk with them at their last visit.  The doctor used the term dementia several times and also point blank told Dad that it would be a disaster  for them ( or for him) to move out of assisted living.  Dad asked what he meant and the doctor used the example of burning the house down because the stove was left on.  I still do not think he accepts this.   You might try a sit down with their doctor though. 

If your Dad is able to understand technology enough - you might direct him to the spouse as caregiver forum  which shows up under this forum.  That might give him some insight. If your Dad is a reader, you might buy him a book or  two on the subject.  My Dad is neither and is stubborn and not a deep thinker, so those options are out for him. 

ecsteinbach

Thank you for your insight. My sister and I are trying to engage people of authority and those he trust to help get the point across. I don't want to think about it, but we have talked about an "intervention" for my dad, too. Thank you for sharing your story!

star26

Rather than trying to convince your Dad of anything or trying to get him to take direction from his "girls", you may have better luck with proactively implementing some solutions on your own that require minimal buy-in and approval from him (and ideally, no work on his part.) Some ideas: 

After researching care agencies, say "Dad, I found this great lady that can come in every M, W, and F from 12-5 so you can relax, or play golf or do XYZ without Mom. While she's there she'll do the laundry and some housecleaning and she'll cook some meals for you and Mom and put them in the freezer. Doesn't that sound great?"  (this could be a total bomb but you've put the idea out there for him to consider and you may flush out his objections that you can tackle next time.)  

Research adult day care facilities. Maybe your Mom could get some physical and mental stimulation elsewhere 1 or 2 half-days per week while your Dad gets a break?  Your Dad could sign the papers, and your sister could transport and accompany her there at least the first few times? 

Modify the house for safety so that whoever is home with your Mom does not need to keep eyes on her 24/7. Ex. kitchen safety, lock up dangerous stuff, install slide locks high up on exterior doors. Just get the supplies and go over and do it. 

Have your sister deliver meals once or twice a week. Maybe all the siblings could chip in so the burden is not all on her? 

Get Mom ID and GPS that attaches to her. 

Do research and planning so that you are ready with plans B, C, and D if/when they're needed (in case your Dad temporarily or permanently cannot continue as the primary caregiver). And make sure your Mom has a successor POA after your Dad that is willing and up to the job. 

None of this is going to be without resistance from both your Mom and your Dad, but if it's about true safety and wellbeing, it's got to be done. In caring for a PWD, we've got to choose our battles. Healthy eating, following a certain schedule, and exercise are ideal practices for a PWD but may not be worth the battle when there is serious resistance, caregiver limitations, and bigger fish to fry (such as home safety and getting lost at the Mall). You've got 2 "toughies" to deal with: A PWD and a 70 yr old man. Prepare to loosen up and accept that everything may not be as you ideally wish it could be. 

Sometimes adult children have a lot of concern over a parent's safety before it's totally warranted and sometimes things are truly out of control "bad". And even when it's really bad, if you don't have POA, sometimes it takes a catastrophe to get the ammunition you need to force a change. I don't know if your situation falls in either of these camps, but maybe consider both. 

This forum has been super helpful for me and I hope it will be for you and your family too. 

LaurenB

Hey there.  A lot of what you are writing could be the story of my LO's family.  I sent you an invite so we could discuss privately.  BTW I'm also in NC and caregiving long distance.

Lauren

ecsteinbach

Thank you so much for all these great ideas! My sister and I are being more proactive (researching home care agencies, going on tours of Assisted Living with my parents, setting up a meal train through CaringBridge, etc.). I guess the final step is his buy in, which hasn't happened. The other thing is POA, which my dad is dragging his heels on. Right now, my mom (PWD) is his primary health care proxy, and I am second. I have urged him to change this, but he has been slow to action. Also, my dad's brother is POA currently, although he lives far away and doesn't have much contact with my dad. We are trying to get that changed to my sister, who lives close and sees them almost daily. 

I think I just need to be more patient, although I worry for both their well-being in the meantime. I need to accept I have very little control over anything in life, and I should "let go and let God". 

We are starting to make safety changes around the house, but those are all fantastic ideas. I love the idea of adult daycare but during COVID-19 I'm very hesitant to initiate that. I would feel better after they get their vaccines! 

Thank you again for your response and good ideas. Truly appreciate them!!!

jfkoc

When dealing with us old folks you must understand our need for independence and the need for us to keep our dignity.

Facing the reality of needing help is frightening. It puts the reality of aging and death that much closer.

I tell you this so that you will aware of how important your approach is. Present options in a manner that your father feels that he is still in charge. Let him make the choices.

Before you act plan out the best approach to achieve your goal. "Dad, you need help" is going nowhere. "Dad, I feel left out with mom's care. Please let me be involved?" or "Dad, so and so has a friend who has been laid off and she really needs some work. Do you think she could work for you and mom a couple times a week". 

ecsteinbach

Thank you, this is very insightful. I will try to be more sensitive to these points. I do understand that it must be incredibly scary and difficult to lose your independence. Thank you.

harshedbuzz

The genders were reversed in my situation- dad had dementia and mom was in serious denial around dad's cognitive and emotional changes to the degree she refused to have him evaluated until he was well into the middle stages and the feces hit the fan.

Do ask your dad to update the POA and Healthcare directives to include someone other than mom acting on his behalf. The crisis that got my mom to agree an evaluation was needed was her nearly dying on dad's watch. She developed an autoimmune liver failure which left her weak and confused. I knew she wasn't feeling well, but dad did not recognize or convey how sick she was in my daily calls to check in. A neighbor found her- the color of a schoolbus- wandering around Publix and took her to the ER. A day after she was admitted the hospitalist called me as an "emergency contact". She recovered, but it was touch and go for a while. 

One thing about dementia is that one spouse is diagnosed, both lives are changed. Recognizing and empathizing with that is what worked for me. In dementia, everything is about the person with the dx and what is best for them. I found putting mom first enabled me to support her in recognizing steps she needed to take and giving her permission to transfer hands on care to professionals whenever she was ready for any reason. His denial may be about putting off the time when he needs to be caregiver rather than spouse. Mom often disregarded my suggestions, so I looped her into an IRL support group with people her age to whom she listened when told the same thing.

Between her diagnosis and the pandemic, his planned retirement is not only not going to not happen now, he might not have the stamina after caregiving or the assets to fund it. Dementia is a very costly disease. My mother bristled at suggestions for hiring help primarily because of the cost involved- about $30/hr where we live 3 years ago. She had a point, she would need that money to pay for a MCF when the time came that she couldn't manage his care at home.