Hello all. My mom is 84 and has early stage Alzheimers. She still lives alone in the same gated community as myself. She bathes, dresses, puts on makeup, cooks a little. However, her short term memory is definitely getting worse and I feel like the next “drop” in memory is coming. She’s not in need of caregiving at this point but companionship. However the shift in lack of short term memory and forgetfulness of bigger experiences from a few years ago is startling to me-it’s hard to accept I suppose.
My mom goes into robotic calling due to sundowning and just wants company, yet only my company. Even after spending time at my home or at dinner she calls as soon as she is in her house for me to come over and “be together”. She also forgets that she was even with me before that, just minutes later. Sad. She cannot live with me. I also am a single mom with an active, studious teenager and I can’t be her only social connection. She wants to sit and watch shows every night. She can also be very negative which makes things more difficult.
I’m reaching out to find out my next steps as I’m very new to this. Do I hire companion care from 4-8 to alleviate sundowning and provide company to watch her shows? Although she then says she is fine and does not want that. Someone mentioned speaking to a caregiver consultant?
I’m overwhelmed, heartbroken and it’s taking a toll on me physically and mentally as I handle all of my moms affairs all across the board.
Looking for guidance. Thank you.
You don't need a 'caregiver consultant' as much as you need to either get mom on board to bring IN a caregiver for her or get her placed in Assisted Living that has a Memory Care wing/building attached to it. While you are heartbroken to see the decline in your mom, you also have to put your emotions aside and take action for her well being and safety. Nobody wants to see our mother's like this; trust me, I know. Mine is almost 95 with advanced dementia and living in a Memory Care ALF since 2019 and her decline the past few months has been dramatic. She's taken 41 falls since moving to MC, and 40 falls prior while living in regular Assisted Living. She's now wheelchair bound and incontinent.
Read all you can on the subject at ALZ.org and pick up a copy of The 36 Hour Day which is a great reference book. Watch some Teepa Snow videos on YouTube and learn how to deal with and interact with someone who's going down this terrible road. Prepare yourself the best you can, in other words. It's not easy so you need to have a plan in place for her care. That's the best advice you'll get: plan plan plan.
I'm an only child (at 64) dealing with my mother's entire LIFE (and my dad's before that) for the past 10+ years and it's taken a huge toll on my health, both emotionally and mentally. It's the hardest thing I've ever done, and watching her mental and physical decline is exhausting and heart wrenching too. I feel your pain. She's now calling my husband Angelo who was her brother in law's name, and telling me she's riding the subway to see her mama & papa who have been dead for 36 and 60+ years already. They go back in time to when they were children and life was simple and carefree, is what happens (mentally).
Wishing you the best of luck with a difficult situation. Please include plans to take care of YOURSELF amidst all the chaos that will threaten to swallow you up alive.
I would think about moving mom, or getting her to agree to move to Assisted Living within a community that has Memory Care as well.
She would have a much more active community around her. Things to do and people that she could interact with. Later as she needs more help it would be available for her. And you would have staff that would keep an eye on her and make you more aware when she reaches a level where she needs more care.
She can cook now but what happens when she leaves the stove on and a kitchen towel on the burner or on the side of the pan. Or forgets that she has a pot of soup on and goes to bed?
What happens when she decides to go for a walk and forgets how to get home? Yes it is a gated community but she can still get lost. Hypothermia? fall into someone's pool? fall and break a leg? Or possibly leave the community and just wander off. Wandering is a real risk. And if mom drives that is even more of a problem. She can get a lot further in a car than walking and it can be just as deadly.
(about 60% of people with dementia will wander. Of that 50% may suffer serious injury or death. Just 2 statistics I found...just something to keep in mind)
Personally, I’d start with companionship care, and choose someone that you like. They’ll see things you won’t, and vice versa. You’ll have a more overall picture of how well she’s coping as her condition progresses because you’re not there all the time.
It is overwhelming, and heartbreaking to see someone’s mind slowly get stolen (like my Aunt) or quickly (like my Dad). Your focus just naturally shifts to safety. Keeping her safe. She also won’t be able to live alone indefinitely, so it’s a good idea to forge a long term plan as well as a short term plan.
My MIL lived 6 miles from us. We were in the throes of figuring out something was "going on" with her but weren't sure what. She seemed "normal" but a little "ditzy". Then on a family outing she nearly fainted and when we brought her back to her home, discovered that she hadn't eaten any of the food or meals we had brought her. There were no signs she was eating anything. Plus she wasn't taking her thyroid meds properly. This is after I was calling her every single day to "walk her through" taking the meds over the phone, which she was confirming she was doing, but wasn't. And I'd ask her what she had eaten that day and she'd give me a detailed list -- except none of it was true. My point is that now you will eyes on her in person to know what your mom is actually doing, so a companion or first-tier aid would be a good idea if she has the finances to cover it.
For 2 other aged relatives we went through an agency and got a companion for 4 hrs a day M-Sat. She was awesome! Besides taking them out on errands and entertaining them, she did some light housekeeping, food prep and hygiene.
FYI in hiring someone the "best" people want the best schedules: a minimum of 20 hrs a week on predictable days and hours. This regular schedule will also be good for your mom's ALZ.
I wish you all the best as you look for a solution that works for everyone!
You nailed it with the statement that this is startling and hard to accept. BINGO! Oh and the negativity. So very difficult. Annoying and draining. Ugh.
My mom lives with me. We are waiting to get a prescription for a CPAP then I'm waiting to see how she responds to it. The day after her one night using it at the sleep center, she was much better the next day. If that is not a consistent result and her extreme confusion and lack of short term memory persist, I will be doing the same thing that you are. Figuring out who to hire and for how many hours, etc. I'm busy and can not and will not be her everything. It's not good for either of us. Especially me.
I also like the idea of assisted living. Living alone with these problems that are only going to get worse is just a train wreck waiting to happen.
Good luck.
I would try a caregiver for company at those hours 4-8pm. Ignore any "I want you only". It stems from her trust in you + you understanding her. A 'stranger' is harder to feel comfortable with. That's the trick... the stranger needs to become familiar. Your 'friend' will visit with you, building trust. Then alone.
You will be a better support to Mom & survive this better if not a strungout frazzled solo caregiver. Also you will still have time to be a Mother yourself. I regret letting my kids fend for themselves while I rushed about at beck & call.. 😔
Basically when folks get to wanting company 24/7 they may not SAY they want to move, but emotionally they may need to.
and it would give you break !!!
good idea !