Newbie feeling alone
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Scheduled a full day visit in mid-February for Mom at the RCF in my neighborhood, which was the #2 choice out of the 7 we initially toured in Sacramento. They still don't have a 2 bdrm IL unit available, but at least we'll have a better idea how it compares to the RCF she's currently at.
Going on a solo tour tomorrow at the CCRC in my neighborhood. Hoping it is more like my LO previous CCRC in SC, but with better AL & MC facilities. If it is, it would mean further downsizing for my LO, but that would be a good thing at this point.
Monday had the initial visit with her new PCP. Went great. Also met with PCP solo to inform him of her sundowning and other PWD related behaviors. He was of course surprised, as she showboated during initial exam. Blood work results are coming in; some rough results and some normal ones. I'll expect pretty fast contact from the new PCP about some of the blood work results.
All in all, things are moving along, and I'm learning fast to both take time for myself, and get her home before dark 🙂. It helps SO much!
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Sounds good--it really helps to have them closer, all things being (pretty) equal. Am moving mom to MC soon but not where she currently is--they have gone downhill since they lost their DON and never replaced her with another RN. It's basically a hospitality level AL with a fobbed entry. You know it's bad when you're counting the days to get your loved one out, plus it will be a bit closer too. Glad your mom's up for the move--sounds like it's going well!
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Yes, it's definitely already a huge relief to have her closer. It would be even better for her if she's on my side of the city. We'll see how the visit at the #2 RCF goes in a couple of weeks.
Sorry to hear the current placement for your mom has gone down hill. We are so fortunate to have more than 1 option for facilities close to us.
I'm pretty sure I can safely be called a helicopter daughter now 😆. I'm over there at least 3 days a week, making sure they're providing what we pay for 😊.
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I'm feeling sad and depressed this week. It was a very difficult week for my LO; "foggy brained", lots of short term memory gaps, and some bigger memory gaps.
I pick her up from the RCF every Saturday morning and she spends the weekend with me. This weekend she didn't remember going to the same restaurant I took her to for brunch last weekend.
I nearly had a heart attack when she wandered off to a store in the shopping plaza while I moved the car. I won't make that mistake again.
The Alz Assoc in person support group is this Wednesday. Grateful for that.
I'm monitoring her daily medication; got her a daily pill box today and told her I expect her to use it effective immediately. I pick her up again on Wednesday afternoon, so I'll check on that.
Her ADLs are still good. And she's still safe in IL at the RCF.
The other RCF visit closer to my house got rescheduled from last Thursday to this Thursday. I'm hoping for a positive outcome from that, so she won't be resistant to me moving her across town, or at least less resistant.
I can tell that my LO is coming up quickly to a turning point of further decline.
I've asked my PCP for a therapy referral, so I can get more support for myself.
This all suxs.
Riding on the struggle bus,
Cat
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The struggle IS real, I’m very sorry. I hope this coming week will feel more peaceful.
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@catminor you are certainly on the struggle bus but you are doing great, your mom is so lucky to have you. It’s painful to realize that no matter what we do there will be sharp declines. Sometimes sharper than we expect; and then sometimes they seem “ok.”
I think it is wise you are thinking if of moving your mom closer. Does the place you are looking at have memory care? My mom went from Independent/Assisted Living to MC in just 1 year (just 1 move since IL/AL were just different levels of care, and MC is in the same building). It was unbelievably painful, but helped so much that it was all integrated - especially the design, staff, and even some residents. Now is a good time to start checking out the MC units. I hadn’t, but got lucky.
I am so glad you got a therapy referral. That has saved me. I hooe you get some rest this week.
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The RCF she's at now has AL & MC; it's just that it's on the far south side of Sacramento, so 25 minutes from me. The other RCF also has IL, AL & MC, but it's only 10 minutes from me, and it's closer to her new church, the bridge club I take her to, and many other things she still enjoys. We had toured both before I moved her from SC early December, but the one she chose had the bestest apartment. There's nothing wrong with the RCF she's at now, but it is much smaller than the 2nd choice, as well as being further away.
She may end up staying where she is. Not a huge difference, for me. I just want to make sure she's at the RCF that's right for her. She's super social, so a larger RCF would benefit her. Maybe soon, it won't even matter which one it is. I don't want to move her again, but I will if it's best for her.
Yes, I'm looking forward to finding a therapist!
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It really does sound like you’re going everything right by your mom. I 💯 agree with you - it doesn’t as much matter the distance to you, but where she can get the best quality of life. I understand because my mom is very social as well, which is part of what has made this disease so unbearable as she moves into later stages. So what you’re thinking about re her social life is not minor! Let us know what happens.
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Thank you, me too 🙂
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You're not alone. We are all here for a reason, for support & be listened to. I hope you have support of a spouse, your own children? Are there support groups near you in CA? If nothing else, get on here when you feel the need. Just care for yourself as much as you can. This whole journey is very difficult, hold on where you can.
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Thanks @irene912 . I don't have a partner or children, but I do have close friends, and I attend the monthly Alz Assoc in person support group in my area.
This forum is definitely a lifeline of support and education. Sometimes I come on here and just read a lot of posts, and that definitely helps me feel less alone. We're all going through it, one way or another.
Thanks for reaching out 🙂
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Good. Hope your friends are a great support & understand. Reach out anytime. It helps me too.
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Frustrating day for me. Took my LO to spend a pre-planned day 8:30am-7:00pm at the RCFE close to my house, so she could experience a day there to compare to the RCFE she's at currently.
Walked her in at 8:30am. The facility staff took her to join in socializing over breakfast, and had plans for her to participate in activities throughout the day.
I went home and started organizing my day off stuff to get done; chores etc.
I got a call at 11:30am saying she wanted me to come get her. I got there, and she was at lunch with other residents and said she wanted me to come at 2:00 to get her, and that there wasn't enough activities to keep her occupied. I stayed a bit, had lunch, and went to talk with the director. Eventually, I told my LO to stay for the afternoon activity at 2:00pm, and that I'd call to see what's up.
My LO is a high maintenance princess that seems to think it's everyone's job to keep her occupied. It's driving me insane!
It doesn't seem to matter what I do, or how many activities are available. There's just never enough, and I can't get through to her that the world doesn't revolve around serving her every need 24/7.
I feel like I sound harsh, and that makes me feel even more guilty than I already feel.
I wish venting helped. Maybe it does a little bit.
Who even needs to be so BUSY all the time??? And then, when I load up the schedule she complains the opposite; too much running around and she's tired. I feel like I just can't win. And that is the reality of this disease.
There is no winning. Just surviving.
I will take a long salt bath tonight; it helps. Crying at the support group yesterday helped a little
Some days, I'm just holding on for this nasty ride.
Thanks for having space for my venting. Thanks for listening.
Cat
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Hi Cat,
It may be that your mom is a bit farther along than you realized, and/or the move has challenged her and you're seeing more behaviors. It's not uncommon for changes in environments and/or an acute sickness to push the person forward a bit. Sometimes there's a good bounce back, sometimes people don't return to baseline, given the progressive nature of the disease.
You noted that she's sundowning. Some people think that in the earlier stages sundowning can indicate that a person's tapped out their mental reserves by the end of the day. It could be that trying to keep up with all this new information is using up a lot of her daily bandwidth. It wouldn't be unusual for her short term memory loss to be worse as well. So you may be running up against two things that are pretty common early on, especially when a parent moves to town...
First, because there's no memory of recent activities, that 'nothing' in their recent memory will = doing nothing and being bored. Even if you walk in and see them doing activities, 10 minutes later it may be ''No recall = didn't happen''. Everyone here will tell you a story of their loved one, who was just spied being happily engaged, looking at them and telling them 'I'm bored, there's nothing to do'. If your mom's a social butterfly who really enjoys interactions, then when she can't recall them she'll feel like she's not doing anything. Sadly, you can't do much about that, but you can let go of feeling guilty about it. It's the disease, not you.
I would go less with what she says, and more with how she acts--if she's tired, seems like she's struggling, or getting sundowny, then back off on activities. Maybe start small and routine (lunch?) and add slowly as tolerated. Less is more when you can't retain information very well. My mom responded well to us just sitting and listening to music from when she was younger if she seemed frazzled.
Secondly, a PWD won't recall talking with you or making plans. At this point they're starting to live in the moment and not really sensing the passage of time. What sounded good to them at 11:00 will be forgotten and won't sound like a good plan at 11:15. Adjust accordingly. The ball's in your court in terms of being the one of you two who CAN plan, so don't exhaust yourself trying to keep up with dementia. She likely isn't able to recall plans, or when or how often you're visiting, so don't feel like you always have to be on the hop to keep her busy. At some point making plans becomes pointless and it's easier to show up and announce what the plan is. My mom could manage a calendar for a while, so that helped with showing her activities she could do, or setting up our lunch dates, but eventually she lost that. I'd hazard that your mom's memory loss means she might not be getting much value out of site visits, if that makes choosing a new facility easier on you...
You've worked hard to get this far, don't put yourself through the wringer to try to keep up with dementia.
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Thanks so much for such a comprehensive response to my post. It really helps!
I think you're right that my Mom is further along in the disease than I'd realized. She seems to be reallllly good at masking, which makes it challenging for me to see all the underlying signs of the disease progression sometimes. I think she was really hiding her symptoms even before she asked me to take over the finances last April. She's fighting hard to hold onto her independence, and she's really scared at what's happening to her mind 💔 😔.
I really appreciate what you've pointed out. So helpful. And accurate. Because, now that I think about it, even when I call her and ask about her day at the RCFE, activities, etc, she doesn't remember what she did all day and will go to her calendar and tell me "we had this today, so I'm sure I did that because I sign up for everything ".
The reality may be that she wanders around her apartment a lot, then wanders to the main building to find humans. That lack of awareness of the passage of time you pointed out...yes, that's definitely happening.
I think she's rapidly moving into Stage 4. I'm watching vigilantly for ADLs and safety issues.
I think it's possible I won't move her to the RCFE closer to me until she needs to be in the MC unit. At that point, I definitely want her down the street from me. I don't know. I just want to do what's best for her. It's so hard to know what that is sometimes! And it's so challenging to also do what's best for me at the same time.
Thanks for what you said too, about not putting myself through the wringer trying to keep up with dementia. If I could just be able to differentiate what's the disease and what's my Mom 😑, it sure would be easier.
By the way, I was called back to pick her up again a second time today, about 3:00pm, and when I arrived, she was happily socializing with 4 other residents. I gave up, let my frustration go, and just sat down to join them. Then I asked who had dinner plans, prompting an invite from them for my Mom, and told her I'd be back at 7:00pm to pick her up and take her home.
I'm exhausted, and all I did was drive back and forth to that RCFE today 😵💫.
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Cat, perhaps you need to consider MC sooner rather than later. Part of the issue may be that she needs a higher level of support than she's getting. We all tend to overestimate our LO's abilities and underestimate their disease progression.
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Yes, I am considering MC already. I do think she needs a higher level of support; just not sure if that's MC or AL. I feel like she's not ready for MC level of restriction. I know it's difficult to assess, when her ADLs are solid and she's staying safe. I feel like she might crash if I move her to MC too soon. Maybe AL would be a good transition step for her.
I think it would be good for me to go tour the MC & AL units at this RCFE in my neighborhood that she just visited yesterday. I did that with the other one where she's at IL now.
I'm about to call her and see how she feels about the RCFE she visited yesterday. Hoping the huge increase in socialization had a positive impact of her interest in the place.
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I know we all want to keep our lo happy, but maybe you’re jumping a bit to quickly when she makes a request. It sounds like if you had just apologized and said I’m sorry I can’t come pick you up early she would have been just fine. Sorry maybe that is kind of harsh. I can literally do nothing to make my lo happy, so I guess my point of view is jaded.
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Nah, not harsh. I admit to being a helicopter daughter 😆. Yeah, she prolly would've been fine. I, however, would've just felt more guilt; trying to head off more of that.
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RCFE update:
My LO has stated clearly and repeatedly "I want to live closer to you, and there are nice people everywhere. When are you moving me?". 👍
I've set up a meeting on March 6th with the sales manager at the other RCFE; will tour the AL & MC units, go back over all the numbers, and put a reserve deposit on the next open 1 bdrm deluxe IL unit. I've told her estimated move would be May-July, dependent on that unit size becoming available.
In the meantime, I'll find a small storage unit rental near the new RCFE, and will begin getting everything in my LO garage at her current RCFE over to storage. Thankfully, the new unit will be almost the same sf as her current unit, so more downsizing won't be necessary at this time.
I feel relieved that my LO is accepting this 2nd move with grace. Yesterday, I took her for a perm - she's a very cute little old lady 😊. Even when this disease is challenging, I love her so much, and hugging her melts my heart 😊🤗❤️.
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Thanks for the update… keep ‘‘em coming!
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Random stress alert 😐️: why does my list of things to do for my LO NEVER get smaller?? I cross off 2 things and add 3 more 😮. There are days when I feel absolutely insanely thrilled to just get 2 loads of laundry done for myself. And it's family tax prep season too! 🙄
I did, however, finally get an appointment scheduled with a therapist...for April 8th 😑. Not that I need to talk about anything NOW 😆. Just sayin.
Not enough minutes in a day for all this 💩.
Chasing my tail over here 😊.
Cat
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Update:
Did the AL & MC tour at the RCFE closer to me; very pleased with the entire facility. They also just had an IL resident give 30 day notice on her 2 bedroom unit; I am taking that unit for my LO as of April 1st. Will spend the month of April slowing moving her across town, and will be all set by May 1st.
My LO is very happy she will be in my neighborhood, and won't have to downsize further yet.
I am thrilled she'll be close enough for me to go hug her every day, join her for dinner at her facility often, and support her relative independence as long as her ADLs and safety are still good.
I will enjoy my vacation in Italy, and be recharged to get the move done for April 😊.
Cat
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Hi Cat- Welcome, I am new here too. I completely understand feeling alone, This looks to be a well organized group, I hope you find some comfort and support here.
J
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> @LadyTexan said:
> Greeting Cat. Welcome to the forum. It has been a life saver for me.
> My dear 84 year old mom has Alzheimer's. Last month both my parents moved into my home with me. It is a relief (and a challenge) to have both of them with me.
> I am one of their 3 living children. All of us children live locally. The other two children are noticeably less engaged in my parent's lives. I feel alone. I am disappointed with my siblings but I am not surprised. When I accept that I am in the trenches alone, I lower my expectations of any help and reduce my resentment of my siblings.
> I am glad you found the forum. It is a supportive resource. Again, welcome.1 -
I am glad to have found this group. I am feeling terribly isolated and overwhelmed. Just gave my notice at work. I've been working full time and am also the primary caregiver for both my parents. I'm exhausted. Hopefully once work is done I pray it will get a little bit easier. It's been two years. I'm sooo tired1
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Hi J 🙂,
Thanks for the welcome. I'm glad you found the forum support too. Great group of experienced folks here, and tons of helpful insight, education, and support.
Cat
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Thanks so much. This forum is amazing! ❤️
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Just popping in real quick to say hi to all you lovely people. I'm in the middle of moving my LO across town to the RCFE in my neighborhood; this week is crunch time, as the furniture movers come this Monday. I'm a bit tired of being tired, but I'll make it through 🙂.
I'm reading all the threads when I can. Thanks for sharing so much of yourselves here. It helps me tremendously, even when all I have time to do is lurk.
Cat
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Got my LO all moved in and unpacked at the facility close to me. She's doing ok; she's safe and in a good facility, and that's what's most important now.
I see her almost every day now, and that's good for both of us. But, a couple of days ago, when we were sitting on her balcony talking, for the first time, a sentence of complete jibberish came out of her mouth. She didn't notice, but of course I did. I didn't indicate anything though, which I've learned from you all here.
So, I've submitted the referral request to the Kaiser Memory Care Center, and the geriatric department. Will follow up on that tomorrow.
I'm feeling down, and concerned about her walking off the facility grounds for her morning routine. She is resistant to the idea of limiting her walk to the grounds, although she understands why I am concerned about her safety and appreciates that. So, I called the ALZ Assoc hotline tonight to talk to someone about it. They were actually too busy and had no one available for 3 hours. They sent me stuff to read. A bit disheartening, I guess. C'est la vie. I'll wade through my difficult emotions best as I can.
At least the facility has absolutely reassured me that if there are any indications that my LO needs assistance in the facility, due to her memory decline, that they will call me immediately. She is still functioning at a high level with ADLs and social engagement.
I've read so many times on here about the ship sailing for AL & MC. My LO is still SO vibrant and active; I take her to play bridge at the club every weekend, and she still plays golf. I'm taking her to South Lake Tahoe for a few days for her 90th birthday. I cannot imagine it is time to take those things away from her; she would give up completely. It would crush her spirit.
I hate this disease. It's so hard to try to figure out how and when to do the right things for my LO.
I guess I just have to remain vigilant, and do the best I can to make the right decisions at the right time.
My heart feels heavy. I am taking decent care of myself, so there's that.
-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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