Newbie feeling alone
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It's not you. The disease wipes out the ability to have empathy or use reasoning. Sometimes you just have to do your best to get through it while being soothing, no matter how jerky they are. You hang in there!
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I think it's the loss of control, along with general confusion that can cause PWD to lash out. And it's often aimed at those who are closest. I hope this doesn't became a part of her behavior. You are being an amazing, loving caregiver, but I fear she won't appreciate it. Stay strong!
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Thanks. Hanging in there 😵💫
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I have a list of counselors in Sacramento prepped and ready; she'll be able to vent to, yell at, and be mean to someone besides me. Still, it's painful stuff and not easy at all to detach from emotionally. She's not even full on dementia yet, and I already hate this disease.
I'm so grateful you all are here, and so sorry for what you have already gone through with your loved ones.
Thanks for being here for us newbies ♥️
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Cat not to lob another grenade at you, but it's not likely that she will benefit from counseling, she is unlikely to have the necessary insight. unfortunately what you experienced today is probably the first salvo, and you should be prepared for it to get worse instead of better, you are inevitably going to be the bad guy and the safe target. The counseling may benefit you, on the other hand....
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Also, I've realized that I have no backup POA if something happens to me 😐, and I don't even know who to consider as a backup. Maybe one of my Mom's nieces or nephews in Denver? I guess once she's settled in CA, I'll need to reach out and see if one of them would consider being a backup.
On a completely separate note:
This entire experience so far has already shaken me to my core, because I have realized that I have absolutely zero clue of who will be there for me at the end of my life, whenever that is (I'm 54, so hopefully not for a while). And, I'm fairly certain that my current LTR is not going to survive these next years of me caring for my mother. Sad truth, the writing is on the wall.
It's like I can see the light at the end of 1 tunnel, and then suddenly there's another dark tunnel after that. I best find a therapist 😌
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Ouch, that hurts. But you're right to be realistic. I hope to be extremely proactive about my own care. I was fortunate to get advice about buying long-term care insurance in my early forties, and though the premium is steep, even after 25 years it's a fraction of what the cost of care would be. When my partner dies i will look long and hard at what my next living situation should be.
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I hear you. Reality checks welcome and accepted. Thanks 🙂
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Fear. Fear of change, fear of their own decline. Grief as they are losing their familiar environment, friends, possibly even their memories of these important connections as the dementia progresses. And it all gets leveled at their safe person, the one they are trusting to care for them and make the hard decisions. Hugs to you. Under the meanness, i hope that she knows that you love her and are doing the best you can for her well-being.
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Maybe she lashes at you because you’re a safe place to put her fears, anxieties and blame on. It’s very hard to be what seems to be the source of our LOs frustrations, yet we know differently. You’re doing a wonderful job for your mom. She’s blessed to have you in her corner.
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Thanks for the insight about LTC insurance. I just reached out to a few brokers 👍. Funny, I retired from the Life Insurance industry at 48, but it hasn't been until now that I've more seriously considered my own care needs in the future. I can definitely see myself choosing a community such as the one I'm moving my Mom into. There's one lady I met there who is a spry, independent living resident, and she's been there for 12 years already. I think she chose the place pretty soon after retirement . Seems smart.
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You all are an incredible support system! Thank you with all my heart, for your kindness, empathy, reality checks, and solid advice ♥️.
On the countdown now: Carvana picks up Mom's car tomorrow, and the folks come to crate up a marble table top.
Once that's done, I head back to Savannah tomorrow to do final walk through with the contractor on the rental properties, and get them paid.
I get the weekend for myself 🎉🎈🎊 in Savannah. I'm going to eat, sleep, and Netflix 😊. Gawd I'm tired 😵💫.
Sunday eve, I'll be back in Hilton Head to spend the night.
The packers come Monday morning; I'll likely spend the night back in Savannah, unless they leave a bed unwrapped for me 🤞 at Mom's. I reserved the Guest Suite at the CCRC for Mom for Monday night.
Tuesday morning is loading. Taking Mom back to Savannah with me that day.
4 days in Savannah, and we're on the flight home.
Almost there!
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Update:
Her new CCC doesn't have a respite room available, as they are completely full.
For the 3-4 day stay at my apartment, I'm going to try to signs on the patio door first, for the 2 days I'm there with her. If she complains about the signs, I'll know she'll take them down when she's there alone, and do the key lock on the bedroom door to secure the cats while I'm at work.
Heard from the moving company about the unloading process: they'll be placing furniture as directed, setting up the bed, and stacking boxes in rooms by label 👍.
I talked with Mom about unloading day; she wants to be there, and doesn't want me to take more time off from work. I think that will work out fine. We're already paying for her new facility; I can take her there for the day before I go to work, and she'll be able to hang out in the community center, start getting to know other residents (she's a social butterfly), participate in activities, have meals, and be on site for the furniture delivery. If will want to stay at her new place as soon as the furniture arrives. I can pick her up after work if the furniture hasn't arrived. Basically, adult day care 👍.
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Keep us posted..... I just hope you're not overestimating her abilities cat. It's easy to do....better to underestimate than overestimate IMHO....
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M1, I hope I'm not too...just trying to find a little space for her to work with all this, so she doesn't feel like I'm treating her like she's lost her mind, which she hasn't quite, yet. It's a tricky balance 🤷♂️.
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And, I have drawn some strict lines with her. ie: If she wants to be there for the unloading, she'll have to be at the facility all day while I'm at work, waiting for them to arrive. She complained about that solution, saying she'll be bored all day, but there's no other way she can be there if the delivery arrives on a day that I'm at work. I also like that solution, since it means that she'll be under watch of the facility while I'm at work. Tbh, she's gonna be unhappy about it either way, but at least that way her safety is secured.
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It's my Self-Care Saturday 🎉🎈🎊.
OK, I did go meet another contractor this morning for a quote on upcoming 2024 rental property work.
But that's it, I swear 😊.
Went back to my hotel, ate, watched movies, and took a 3 hour nap 😊. Nothing but more of the same tonight 😊.
I haz tired, but all will be OK.
Spending time with a dear GA friend tomorrow, before heading to spend the night with my Mom. Kinda glad there's things that Mom and I need to do on Monday, so we are out of the packers way.
Hope you all are getting a smidgen of self care in too - every little bit helps!
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It's travel day. So relieved to be taking Mom home with me.
The next 2 weeks in CA will be a bit hectic, but that's ok. Almost done with the big move.
Hope you all have a peaceful day.
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Cat I'm so glad you made it through. As you said, next 2 weeks will be hectic but you will be home, she will be there, and it will settle down. Safe travels and I hope you get some rest.
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Bless you and bless us all ! You are doing the right things . I'm in a similar position and yes I have a brother who does nto have the capacity to be helpful. So we are alone and not alone.
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🎊🎈🎉 Happy Note:
I'm happy to say that Mom is all moved into her new IL unit at the Senior Living Facility! The apartment is almost completely set up; just wall hangings left to do. She is doing well with the changes, and is happy with her new apartment. We decorated for Christmas 🎄😊.
Her memory decline seems to be accelerating; I've already changed her Medicare provider to California. Next will be search for PCP and pursuing proper diagnosis.
Also, we met with local estate attorney yesterday, to put a Pour Over in process. That will be done by mid-January. I'll be contacting my cousin to make sure he is good with being a backup POA etc, just in case I die before Mom does.
I finally made it to the Alz Assoc. local in person support group. It was SO helpful!
Mixed News Note:
During this entire month+ process of moving Mom from SC to CA, my partner of almost 5 years decided it was a good time to break up 😐. We had been struggling, and had previously discussed couples therapy, but I really (obviously) needed at least a few weeks to move my Mom and get her situated. I never imagined my now ex would pull this literally while I'm in the middle of this huge move with my elderly mother. Who even does that?!? Whatever 🙄. She's moved out already, at my insistence. I'm happy to be free of the relationship 🎉🎈🎊 . The difficult part has been that she tried to say she is taking both of our cats, Sammi & Luca, 😫 (she also has 1 cat, Nemo, that is only hers). The whole situation has been difficult, but, she finally agreed to leave 1 of our boys (Luca) with me, and to putting in writing a custody agreement to have a 3 month check in about our 2 boys, to discuss how they are adjusting without each other and each of us, in the event that one of us needs to return Luca or Sammi to be with each other. Then, a 6 month final custody decision.
At any rate. This last month has been brutal, but everything is falling into place pretty well.
And, I get to decorate my apartment for myself 🎉🎈🎊.
Life is life, and it goes on 😊.
I hope you all have a safe and peaceful holiday!
Cat
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Good to hear your update. Sorry about the breakup though. Stresses are cumulative.
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So happy the move went smoothly! That is fantastic news. I am so sorry about the breakup. That is awful. I am glad you have the one cat. Also things WILL fall into place. You have done a LOT and I hope you can have some time to rest and recover. It sounds like a lot of running on adrenaline this past month. But well worth it.
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I moved my mom from SC to WI. It feels so good to hear that others have done the same thing. It feels so uncomfortable to make that type of significant decision for someone else's life. It feels especially uncomfortable and burdensome on days she's her normal self and can make logical decisions.
Sadly though, she's not always herself. Lately she's been using words incorrectly. The other day she said, "eating" her shirts" instead of "washing" her shirts. She didn't think anything of it. That brain is an amazing organ.
You guys are all so wonderful!! Your words are like virtual hugs reassuring me that everything will be ok.
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@Anonymousjpl123 Thanks so much. Me and my Luca boy are chillin together this week, resting, and supporting each other 😊. Just a few days to spend time with my Mom this week, which is a nice break from the insane pace. Yes, well worth it to have gotten her here and mostly situated!
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Things are going fairly well. Finally got Mom's landline and wifi turned on at her IL unit. That will help both her and me much.
Mom is very impatient, and that is driving me a bit nuts. She's always been impatient, but the part that's driving me nuts is her asking the same things over and over, since now she forgets the answer to questions she's already asked. This disease is truly crazy making, so I'm trying hard to just be very patient and repeat the same answers over and over again. Tbh, it feels eerily similar to gaslighting, even though I know it's not. I definitely get triggered about feeling like I'm being gaslit, so I have to work extra hard internally to respond differently. It all feels emotionally complicated.
I'm having some success getting a social life routine established for Mom. It takes time, of course, but she is so d**m extroverted and active, that it's not happening fast enough to keep her busy and occupied. The activities at her facility are ok; she enjoys some of them, but many of the activities are not very well attended by the residents. Not sure why that is, but I've talked with the activities director and communicated my expectation that they do more to get my Mom engaged and active. That's their job, and a good part of what we pay for, so fair enough I think.
I am definitely starting to take more time for myself, especially during the week. It helps tremendously. And it's such a relief that my ex is fully moved out and gone. I now have peace and quiet at home (except when Mom is with me, lol), and that is huge. My fur baby cat Luca is adjusting well to the domestic changes, and is wonderfully affectionate and cuddly. Yay!
Chugging along,
Cat
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I am in a similar situation except, my husband and I have chosen to move into his home to care for him. Not much support from immediate family and navigating this new life alone. Working like the devil tomorrow to get the office cleared out so my husband can spend more time with us. He works from home but needs a particular work station set up. I called and spoke to the help line the other day and they were able to send me resources based on my immediate needs to my email. I felt better after that call.
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Sounds good, Cat! Your mom's a trooper. So are you. The move will be using up a lot of her daily mental bandwidth so it's not unusual to see some new needs for cueing occur. Wouldn't be unusual for her to be confused and need a lot of reassurance as she establishes a routine. And In the early stages a usually social person may reduce what they do in an effort to be in an environment that doesn't challenge their recall. New people and places may look unfamiliar to her over and over for a while, as she can't imprint that information into her memory very well. Sometimes the person will withdraw either because the disease is affecting their executive ability or because it's hard to make new acquaintances when you can't remember having met them already.
If the AL hands out paper calendars for the residents maybe you can highlight things your mom might enjoy, and if there are field trips check with the office to make sure she's signed up.
A lot of times the reminder for in-house activities might be an aide notifying the residents by a knock on the door or an announcement in the hall. So if your mom's memory doesn't permit her to act on cues like those you could consider creating a back up. I would call my mom to remind her about church, for example, and for a while she would refer to the paper calendar. I tried to put reminders on her ipad, but she would turn off the sound, so not very effective. I think some folks here have used the Echo show to 'pop in' or to schedule reminders, not sure what else might be helpful--at some point your mom won't be able to pick up new technologies, but I think (not sure) the Show lets you be the one to initiate schedule reminders and open video calls without the other person having to do anything.
I know. It's frustrating.
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I only wish she was reducing her socialization needs, but she's actually increasing them 😐️. I think she's trying to stay super duper busy as a distraction from both the reality of the changes due to the big move, and as a distraction to what is happening with her mind. She's not in AL yet; still functioning well in Independent Living. But, even all the activities at the facility don't seem to be enough for her.
Right now it's a bit nuts, but I'm pushing through it. I am picking her up and taking her to the Bridge Center to play every Saturday morning, then she spends the night with me, and I go to Church with her on Sunday morning, we grab brunch after, and I get her back to the facility before dark (because she's sundowning). During the week, if I'm off work AND have taken the time I need for myself, I'll go to her place, hang out with her there, take her out for lunch, get her nails done, etc. So far it seems fairly manageable, BUT there's a kicker coming...
When I flew her out here from SC in October to tour 7 facilities, she chose the one that had the nicest Independent Living apartment. It is on the other side of the city from me, and from the Bridge Center, the Golf Course, and the Church she likes (spent the last month taking her church shopping every Sunday). Now, I don't mind that it's a 20-30 minute drive for me to her; I'm used to Sacramento. But, now she's realizing that all the social things she wants to do outside of the facility are in MY neighborhood. Which I told her when we were touring. But no, she wanted the best apartment. So, here we are, 1 month in, and she's realized that she wants to live in my part of the city...
I will have to move her 1 more time 😭😭
At least she's already here, is safe, and is being reasonable about a timeframe for making another decision.
I've booked a tour (just me) at a CCRC in my neighborhood. Maybe once the property in SC closes EOM, I'll consider a buy-in there for her. Maybe.
I've also booked a week in Milan Italy in March. I need to see my closest friends. I WILL take a real break soon 😊
Cat
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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