My mother and I are sharing caregiving responsibilities for my father who has been diagnosed with dementia. She provides most of his daily care but he is still ambulatory, dresses and bathes himself (with prompts/reminders), eats on his own (cannot prepare a meal), and takes his medicine/injects his own insulin (with prompts). I manage their finances, take care of all home maintenance, and attend all medical appointments. They live on our property but in their own home. However, living with him 24/7 is taking its toll on her mental health. She still passes the SLUMS screening at her annual physical but lately she cannot make a decision. In a restaurant, she cannot order without asking me to tell her what she should eat and drink. In a store, she knows she needs a blouse but cannot purchase one without asking me to tell her which one to buy. I took them to a nice dinner to celebrate their anniversary and she was stumped by each decision. She raised a glass to toast my wedding anniversary (months away) right after reading a card congratulating her for her own. She’s not repeating herself like my father does but the “slips” in her train of thought are worrying. I took her to an audiologist to rule out hearing issues and she passed those tests so I don’t think that’s it. This is one of those questions where I think I already know the answer, but, after two years of taking charge of their finances and moving them closer to me, I’m exhausted and the heavy-lifting of caregiving hasn’t even begun. We’re in the process of visiting senior living options because I know I’m going to be in over my head. I’m just wondering if anyone else has experienced the sudden inability to make a single decision in their LO? Is this typical of a decline in executive functioning or could it be more in line with depression?
By the way, what was I thinking taking them to a nice restaurant for their anniversary? Ordering food was an ordeal. Mom couldn’t order without input from everyone and Dad changed his order multiple times only to be disappointed with what he ended up with on his plate. He noticed a large group of older women enjoying dinner at the next table and announced loudly “well, those Old Hens sure are enjoying themselves!”. It was a miserable experience and I’ve learned my lesson. When these embarrassing moments happen with him, I feel like I’m 10 years old all over again and just want to disappear.
"Oh, nobody could hear me", he claimed, when I spoke to him afterward. Looking at other waiting patients, I could tell that most heard him quite well!
As you are noticing Mom slipping, it's time to take some action. It's sadly necessary for both of their safety.
1. involve your siblings
2. Diary her for a month, then take her and the diary to a good doctor. You sit in on the appointment but let her interact with said doctor. Only interject if you hear an inaccuracy, and then return the interview back to them.
3. Start your investigation into care alternatives for them.
All way easier said than done, but for them, you, and your family, necessary. Best of luck to you!
Best wishes--you sound like a good daughter. Try not to get too stressed...easier said than done, I know.
I don’t tell her I’m bringing food because she will tell me not to.
I pick a restaurant and then order a bunch of selections so that if anyone else is over there they can have some also, and my mom can keep any leftovers. I know what she likes so I choose for her.
Then I show up with food. I tell her, oh, I heard this place was good and I couldn’t choose and I wanted to sample so I just bought a bunch of stuff.
She always says she isn’t hungry but then she gobbles down a plate (she doesn’t really cook for herself anymore and she likes simple carbs).
If she doesn’t like it, then we complain to each other about everything that is wrong about the food. Lol. When I leave, she insists I take some home, so I do and then I leave most leftovers with her.
This has been a good way for us to have dinner together without all the rigmarole of going out to dinner. (Though I can see how sometimes it’s good for people to get out of the house, but then you can take them for a drive and not have ro stop anywhere)
I just never said it, that might change over time 😇😁😂
Best of luck.
I moved in to help my mom when she was facing cancer surgery AND taking care of my Alzheimer inflicted father (similar stage as yours from the sounds of it). I also picked up a lot of the maintenance, management duties of the house.
She was extremely forgetful (would forget major tasks or conversations about agreed upon schedules, etc). For a while I was seriously questioning whether she had dementia or not either and that concerned me greatly.
and ha! I, like you, also try to treat them with things that I would personally have enjoyed only to regret it (turns out their needs are unlike my own, surprise!)
I encouraged and allowed her to spend more time with the people that could help level her; namely her sisters. I allowed her to go travel to be with them and take time off from caregiving to go and just be herself. As her daughter, I am incapable of providing that level of emotional support since I am unequipped for it and don't have enough age to fully empathize & give her the understanding she needs. Fast forward 1.25 yrs later, she is MUCH better and is in a better self aware state. I also allow (sometimes push) her to take responsibility for the things she is fully capable of doing so that I can also ease the load off myself. I could just take over everything but having been a pretty active woman, I think she benefits from having something to keep herself preoccupied.
In any case, maybe helping your ma find herself again could also help clear the air (assuming proper procedural medical tests are cleared).
Even if you try to hire outside help/sitters... trust me, YOU will be the person to end up doing it all. I know... I'm there.
Look for a place that has an interim level (above full memory care, but below assisted living level) that covers those types of duties plus engagement programs designed just for them, so that you can get more help. Arbor Company facilities often have these types of interim programs.
You can then put Mom in respite care while you vacation.
Aloha!
We don’t go to fancy restaurants any more. First, my Mom doesn’t enjoy it as food no longer taste the same. This is a lady who could take a bite of food and deconstruct the ingredients in the food throughout her entire life and she would regularly try new restaurants. Instead, we have settled on about 5 restaurants and we rotate through them. The owners know us so they are used to our routine. Mom knows the food so it always tastes good to her. A special meal is inviting guests to eat with us.
My sister’s mother-in-law has exactly the problem you have mentioned. She cannot make a decision and if someone makes it for her, she gets upset. They can’t take her shopping, because when she finally gets something, she wants to exchange it when she gets home. She will offer to make something, then want to go to a specific store for the ingredients and then at the store decide that she can’t buy it without looking at other stores for the product. As a result, they don’t take her out and they mail order a lot. For restaurants, they always go out in a decent sized gatherings where others make the food decisions and they share the food, family style.
It sounds like you might want to look into Assisted Living facilities that also have Memory Care. Look for a place where they ensure residents go to meals and activities. My sister’s MIL wouldn’t go because 1) she wasn’t hungry 2) she could not make up her mind to go 3) it was too much effort to decide what to eat 4) by the time she decided to go, the dining hall was closed. She regularly dismissed the person who came to remind her to go to meals, then never went. My sister’s FIL would not go because he was waiting for MIL to go. No one knew that they were not eating meals until he ended up in the hospital due to lack of nutrition and passed less than a year later. Before entry into the facility, he was the healthier one of the two and looked after both of them. Yet in certain areas of life, like food, he would let her take the lead.
Do take her to a doctor to rule out any infections, etc. However, because of her indecision, you will have to start taking over making those decisions for her and your father. Don’t let her medical issues affect your father’s health. Just slowly and subtly, take over all the decision making for both of them.
You sound like you are very capable and observant. Please remember to take care of yourself. I’m hoping that you have someone who you can occasionally share your frustrations with as it will help you with the decision making.
All answers given are great. One thing not yet mentioned is sleep!! Before my Moms next SLUMS test, her doc wants her depression (lifelong) and sleep (erratic these days) under control. If sleep is not sound and isn't around 6-8 hours, short term memory issues abound, even for young folks. Best to you thru this difficult journey.
if you can afford in home help and your parents are receptive, maybe you could get your mom a break several times a week where she’s not in charge of watching or caring for your dad?
My father started showing some memory and other issues shortly before his death. I’m convinced it was the stress of caring for my mom.
It's great that you had their hearing tested. Kudos for that!
My Mom is incredibly indecisive when ordering food so I help her pick out her entree and drink well in advance of the waitstaff's appearance and then I relay the order for her. If she gets talking to the waitstaff, she derails the ordering.
So sorry you're having to deal with all of this. Plenty of like company on this forum!
In 2014, mom was well down the dementia highway and that's when her (always difficult) decision making abilities became impossible. Taking her to a restaurant was a nightmare bc of the choices on the menu, then second guessing the choice it took her 30 minutes (And me grinding my teeth) to make 🙄. I had to give her a choice of 3 options myself in order for her to be able to make a decision. And like your dad, then she "should have had" the other thing she didn't order. By the time I dropped her off at the AL, I needed a Xanax myself.
When mom went into Memory Care Assisted Living, they showed her a choice of 2 entrees on red plates (to stimulate appetite). She pointed to one and that's how her decision was made on a meal. When you read here about how how horrible memory care ALs are, I beg to differ. A mc shrinks their large world down FOR THEM and eliminates lots of the difficult choices their brains can no longer make. A smaller, more controlled environment suited to their abilities is precisely what's needed.
To me, it doesn't sound like depression mom is dealing with but effects of cognitive decline or dementia. Those symptoms can take years to develop or come crashing in overnight, everyone is different. Especially with vascular dementia, the steps down the elders take can be quite significant, going from fine one day to very impaired the next.
Best of luck to you.
I agree and am beginning to accept that I can’t provide that on my own.
She had a slight stroke and became afraid to be alone at night and kept calling the EMT's until they started charging her $600 at a pop. That ended that.
We moved her into a AL here in FL. 3 years ago, and she loves it! New friends her own age, activities, bus trips and she doesn't lift a finger.
It could be depression but most likely a combo of dementia & depression. Might be time to bite the bullet and place them in AL.
My step-mother progressed the same way as your mother is, she is now in MC. Her husband was very sick for several years, she was at his beckon call. He finally passed and she stayed in AL for a year then we moved her to MC.
Take care of you!
i guarantee you, 100% it's mental decline, dementia starting.
her short-term memory isn't good.
but there's nothing you can do about dementia...
apart from:
...if in the future, her hearing gets bad, try to force her to wear hearings aids. bad hearing = accelerates dementia
...try to have intellectual conversations with her. brain stimulation is good.
hug!!
But of course your mother's mental health and wellbeing are the serious issues, only I'd suggest that at the moment, while she's subject to overwhelming stresses, it must be impossible to say what is contributing most to her inability to make ordinary, everyday decisions. It could be decline, could be depression, could be simple exhaustion coupled with anxiety about what's to become of the two of them. The poor love must feel like a rabbit in the headlights at times.
It's good to hear that you're looking at options. What has she said about her thoughts?
Also correct that mom’s mental health is the pressing issue. She has been very passive after years of dealing with a very domineering husband. His dementia has changed his personality for the better but she is still meek and unsure of herself. She won’t admit that she is stressed by her situation and brushes off conversation about her “forgetfulness”. I’m sure she is feeling extremely overwhelmed. I know she appreciates the help I have been able to provide but I’m seeing that it just isn’t enough. She is hesitant about visiting any senior living facilities but is willing to “go look”. I’m touring a few places on my own before bringing her to take a tour. The first one she will see is set for this Friday.
The toll of caring for her husband, even with your help, may be too much. This couple might be so much better in a care setting. It improved my brother's symptoms of his early Lewy's dementia. He got better at once in ALF. Like you, I had already taken over the finances and that helped, but just knowing meals would be prepared, laundry would be done, transit wasn't a problem. All the ADLs (activities of daily life) being taken care of changed things for my brother a lot. The facility told me this improvement wasn't uncommon for their residents.
I would consider a workup. It will be impossible for you to know otherwise. Sure do wish you all the best.
When you say consider a “workup”, would this be with her PCP? I’m assuming I could let the PCP know what I’m seeing and ask about depression specifically.
Thank you for your help. I appreciate you sharing your experience.