Feeling guilt and questioning my decision

LPcaregiver23

I’m feeling immense guilt about how to take care of my 77 yo mom. She lives alone in an apartment and I live about 30 min away. I am a 39 yo stay at home mom to 3 young children (ages 3, 9, 11). My mom just got diagnosed with Alzheimer’s after 3 years of my sister and I noticing serious memory changes. She is intelligent and highly educated and masked her symptoms for a long time, even with doctors. Covid lockdown isolation and being alone really didn’t help either.

Her main issues are with short term memory (repeating questions , not remembering conversations or plans, and not knowing day/time/location, not remembering trips we’ve taken, bills are late, she forgot to reenroll for Medicare RX coverage and now has to pay out of pocket for the remainder of the year) she doesn’t remember to take her meds and I found out she hasn’t filled her prescription since June for her cholesterol meds. Her cholesterol is over 300 and dangerously high. I’m so worried she’s going to have a heart attack or stroke while living alone. 

On top of dealing with the grief and loss of who my mom used to be I’ve gotten to the point of taking her to medical appointments, grocery shopping, filling and dosing her meds and per the doctor’s suggestion getting an alarmed pill reminder. I thought this could be a short term solution but would check on her and find piles of pills lying around her counter or bedside. She also doesn’t remember to change her clothes and I’m not sure how often she showers. She has lost a bit of weight and I don’t think she’s eating regularly…she has resorted to eating bread and peanut butter or frozen meals. She tells doctors that she is fine living alone. There are post it notes and papers all over her house with reminders of things she needs to do. My sister and I have asked her to stop driving due to the liability and she’s agreed. She has gone to the wrong place while driving several times. 

Once a very active and social retiree who traveled the world, was involved in many clubs and hobbies, now she sleeps late, lays in bed for most of the day “surfing the internet” (as she calls it) on her phone. She watches a lot of TV and tires easily when I do take her out or bring her to my house for visits. 

I simply cannot take care of her myself because I am raising 3 young kids. I know she wouldn’t want me to either. My whole life she has saved well for retirement and joked that she doesn’t want to be a burden to her kids. She has a good LTC policy and can afford assisted living. She’s well prepared with legal docs and has already given me POA. 

I found a good LTC facility that is 5 min from my house. They will give her daily meds and she has all her meals in a dining room. I took Mom there and toured it and though she wasn’t thrilled she has warmed to the idea that maybe it’s time to move somewhere so she’s not alone. I feel lucky that she has been agreeable and trusting of me and my sisters’ decisions for her for the most part. They only have a studio available though and it’s a daunting task thinking about what to do with all of her stuff. 

In any case, I signed the paperwork on Friday and wrote a huge check. I’m just racked with guilt though wondering if I did this too soon since she’s still in the early stages? I’m not sleeping and have no appetite and can’t stop running through scenarios in my mind…thinking of other options…questioning if she’s really ready for this?? She has been very clear she doesn’t want someone coming into her home to give her pills. I’m feeling so bad that she has to downsize so much, but also part of me thinks she won’t really notice because her memory is so bad. I think the routine and socialization will be good for her.  Meanwhile I’m feeling guilt for “ignoring” my children by being so preoccupied with my moms care. This disease really sucks and I know it’s only going to get worse. 😢 Did I do the right thing??? 

terei

If your mother is agreeable to this, you are way ahead of most people who have to fight their LO tooth + nail to get them into a facility.

She needs to be safe + then care of + you’re right, it will only get worse. Hopefully she will enjoy the new socialization + you can relax

a bit + concentrate on your children.

Marta

I’m sorry LP caregiver: Your Mom is no longer in the early stages, from your description: losing weight, not changing clothes, bad memory etc. You are doing the right thing.

M1

Welcome to the forum and agree with Marta 100%, this is not early stage disease. In fact you may quickly find she needs more than a hospitality model assisted living, she may need memory care. When the changes are gradual, it's not uncommon for us family members to want to minimize symptoms or to think that the disease has not progressed. There's a common saying on these boards that by the time assisted living is considered, that ship has already sailed. There may also be a senior "mean girls" phenomenon of someone with obvious dementia being shunned by others in AL communities such that it's not easy for her to make friends. Perhaps you can discuss this with the director or nursing supervisor to be sure she's getting the right level of care. You'd hate to move her and then discover in a few weeks that you need to move her again. Not trying to be critical, just realistic.

towhee

Welcome to the forum. There is a saying here "care needs drive the decision making". Judging from what you have said, your mom is no longer safe living alone and since she refuses to have someone come in you really do not have another option. She might actually improve somewhat with regular nutrition, socialization and exercise. It will be an adjustment though, and you might expect some initial decline. You might try to hire a private caregiver for a couple weeks, just to make sure she is getting to the dining room and going to a couple activities. The level of care offered by ALs is extremely variable. Some will take a person to meals, do incontinence care and even hand feed, while others do practically nothing but meds and a weekly cleaning. You might want to keep track of her medications for at least a couple of weeks, whenever there is a change in place, pharmacy, or doctor, medication errors can creep in.

We used to say on here that a person adjusted to living in a facility much more easily in the early stages and the late stages of dementia than in the moderate stage, better earlier than later.

About her stuff, you might want to consider keeping the apartment for a couple of months if you can so you have time to go thru it thouroughly. Even people early in the early stages tend to put things in illogical places. Putting everything in storage for a while is also a possibility.

Regarding her LTC, have you read the policy and contacted the company to make sure she meets their requirements for paying for care? They can sometimes be persnickety.

I wish you well.

oldestdaughter23

I understand what you're dealing with as I'm currently dealing with a similar situation. My mom took a fall (the second one in a month) on March 3, which landed her in the hospital for a week, and then from there into a rehab facility. While there we noticed times of confusion and OT decided to do a cognitive test on her where she scored only 15/30. Worse than I anticipated. Previous to her being in the hospital, my siblings and I noticed unexplained weight loss, and her apartment not being as clean as normal. I'd offered to have someone come in to help and she would say she was fine and didn't want anyone coming in. She was getting increasingly weak and unsteady on her feet. As you mentioned, I really think the Covid shut down really set her back. Lack of physical stimulus and exercise, and all of us being afraid to expose her to Covid after losing our Dad to it. Mom had two older sisters pass away from Alzheimers so I've been watching for signs. I had requested that her primary care doctor give her a cognitive test over a year ago, but she refused when they called to set it up. Anyhow, fast forward to now. She is in a rehab facility and it's been determined that she should have 24 hour supervision. The facility has a AL studio apartment available. So we are in the process of trying to get her into there. Mom has been so angry, and I think hurt because she feels everything is being taken away from her. I understand. First her car, then being told she can't go home and that she won't be able to keep her cat, and not having control over her money at the moment. She's used to having her cash, but the facility doesn't want a bunch of cash sitting around. It's so hard to see her so angry. She wants to go home, but it isn't safe for her to be left alone. She's being taken care of, eating better than she has in who knows how long and is participating in activities that she hadn't done in years. I know she's where she needs to be, but regardless. It's so difficult. I keep second guessing. I'm not sleeping well, and feel so tense. My poor husband. This just stinks all the way around. You're not alone with feeling guilt.

2parents/brain change

Wow, you are a rock star!! You recognize what is happening to your mom's brain. You are reaching out for help through Alzconnected, the absolute best in caring for yourself! You recognize your kids need you and that your mom would put them first, (in a healthy brain).

I am so impressed with your actions. First of all, I am about to turn 70. I can't imagine the heartache for my kids should I show signs of dementia at 77 or before! Second you are doing a wonderful job of caring for your mom.

Give yourself a hug from me and know you are a wonderful daughter!

DotBern

I can totally relate with what everyone is responding with. I, too, placed my mom in a MC facility in Jan. She was angry at first but quickly settled in and enjoyed meeting others and loved being served 3 meals a day in the dining room. She has good days and bad days. The guilt I feel is immense. She has declined more recently after we ruled out UTI etc. She feels she's living in a hotel most often and has more than one room. She is in a lovely studio apt. She insists on having a key to her apt. and gets annoyed when she finds the door unlocked. I remind her that the staff enters to make sure she is safe and to see if she needs anything. They do knock before entering but obviously enter the room for whatever reasons when she is not there. Perhaps checking to see if she's joined activity time etc.

I am an only child and her POA. Thankfully we set all of this up years earlier. I'm told by the staff how happy she is and how pleasant she is with all the other residents. Not always is she with me. She loves attention and appreciates the staff being attentive and the residents all liking her. I had a phone installed in her room when I first moved her there. I'm thinking about having it removed. She's beginning to call me at all odd hours of the day or night to tell me she is being held there and needs to be picked up or that she is all packed and needs to go home now. It was merely "a vacation" and she's ready to leave now. I've come to the realization that I cannot care for her. I should say, physically I could take care of her. I spend 3-4 days a week visiting with her or taking her offsite for lunch or to visit her sister in a nursing home nearby. It's not easy dealing with the changes they go through, the constant repeating of stories or the delusions she has. I can't deal with it. I'm doing all I can to make her life comfortable and visit often even when she wants to berate me for taking her home with me. There was a 10year period where I tried to get my mom to sell her house and move in with my husband and I. I even offered to move in with her and add on to her home. No, she was never interested and reminded me that I'm too bossy and just like my Dad and didn't think it would work out. I am definitely a doer and fixer and she is totally opposite from me. Now that she has been diagnosed with moderate VD mixed with Alzheimer's, I know there is no way I could care for her 24/7. It's too much for any one person. I feel terribly guilty about that but know that I could not provide her with all the wonderful activities her facility offers daily, she gets her hair done every other week and enjoys the meals, most of the people there and I know she would sit in front of the TV daily at my house or expect me to take her shopping or out for meals most often. Not a life I want to live. I am new to being a grandmothers, (3 new littles ones, 2 turned age 2 recently and the other is almost 3). I already feel badly as I don't spend as much time with them as I'd like because I still take care of my mom by visiting with her and bringing her what she needs. Having young children at home is even more reason to know that you can't possibly take care of her and your children. It's too much. We are all in this together and I'm grateful for the advice and the opportunity to vent her when needed. Dementia is awful, we all agree. Keeping our LOs safe and engaged is what is important. I pray daily that I've done the right thing.

eaglemom

First off welcome to the message board. Secondly, I'm sorry you need to be here. And thirdly you really rock at how you've handled this situation. Its natural to second guess the decision for placement, I believe. As caregivers we always want to exhaust everything prior to that decision. In your situation I believe you have.

Your hearts been pulled in one direction in caring for your mom. The other direction by your children. In both cases you want both of them cared for, safe and their needs met. The facility for your mom will allow you to check on her while not interfering with your children. The bonus is the children will be able to see your mom also, to me that is another win.

The decision has been made, and that was the difficult part. Come back and let us know how its going. We are here to help and support you.

eagle

Emily 123

At some point you can't provide the 24/7 oversight that she now requires. You've followed her wishes from when she could make rational decisions for her own care. The thing is, she's probably exhausted from trying to have to keep up with what she can't do anymore, and from trying to cover for her losses. This move will reduce that pressure, and ensure she's eating, getting her meds, etc.

She sounds to be about where my mom was when we moved her. Like you, looking back I see how well she covered up her losses. I'd say my Mom was at least late stage 4. https://static1.squarespace.com/static/6372d16ea4e02c7ce64425b7/t/63f7b80d80d8aa3e3aa4a47d/1677178894184/DBAT.pdf

Do not ask her to participate in much of, or any of, the decision making about what goes and what stays. Choices are hard at this point. This will be a lot emotionally for all of you, and it will go more smoothly (and quickly!) if you make the calls on what to take. Think of it as keeping your mom bobbing along on the surface of this move without having to engage--she just shows up and has her nice new room.

Some things I would do again:

Set up favorite decorations where she can see them. If you can, try to set up familiar, practical things in her room in a way that will spark a memory and nudge into her routines. You might want to get her one of those large digital 'clocks for seniors' (amazon has them). Do make a big note to post to remind her what's going on. Maybe the kids can make some cards :)

What I wouldn't do again: Take so many clothes or shoes. It's better to keep choices simple and seasonal. Store the out-of-season stuff. The things that will get worn will be her usual go-to things. (It's also easier for you to keep track of what's getting washed by the facility.) If she has a lot of something, like tees, keep some back to switch into rotation as things get worn or lost. Do label everything, including bedding, and buy a waterproof mattress pad if you don't have one already. Amazon has soft clothing labels by Avery that stick pretty well. If there's a little kitchen area only take a few glasses or cups, plates, etc.

Also, since you know that she can't really store new information, anticipate that setting up a new routine in an unfamiliar place will take a lot of repetition for her to start to settle in. I think it took my Mom about 6 weeks for her to kind of feel comfortable, and about 3 months to have a routine down. So just know that it can be slow going at first. DO NOT LET THIS MAKE YOU SECOND GUESS YOUR DECISION. My Mom's facility has a mix of AD and non-AD AL residents. They seem to rub along alright, but the more cognitively current folks tend to do things in their own groups, which is not unusual. My mom's not a joiner, and doesn't go in for the arts & crafts they do for the AL/MC residents, but she goes and sits in the common to be social, and it took me a while to understand that although she would tell me she's bored, when offered the opportunity to participate she would opt out by saying she was fine. And again, don't let something like this make you feel guilty or second guess your decision. The image of what they used to normally do or 'should' be doing sometimes conflicts with what they can or want to do now.

Good luck! You're doing great!

Lynberly

We are wishing we’d insisted on the move to AL 1-2 years ago! We just moved my in-laws into their new AL apartment and they both have enough cognitive decline that the transition is pretty hard on them. We are feeling guilty for not doing what you did! Please give yourself a big hug and know that it’s better to be ahead of things than behind.

[Deleted User]

The user and all related content has been deleted.

WorkingDaughter9

I am in a very similar situation to yours. I am so blown away by how generous, loving, and amazingly helpful and effective you are at assisting your mom! and I’m doing very much the same thing as you are, but I still am plagued by guilt. I hope that by reading your post that I can let go of some of the guilt and frustration. My mom is also less happy than yours is, which makes things hard. You are a truly wonderful daughter! I’m hoping you can take that in from all of us here, and truly believe it, so you can begin to let go of your guilt. Wishing you strength and peace.

jmgvp129

A year ago, we went through the same thing with my Mom. I have 2 little ones and live about 20 min from my Mom. When we moved her from her home to AL, we saw things that made us feel even worse for not moving her to AL sooner. She was in AL for barely a year, and already we had to move her to MC. My Mom was a dynamic, independent business woman that was telling us since COVID hit she had been working from home. My Mom was technically "retired" for many years, but continued to work part time and she did this until she was 79! We thought the signs she was saw were just Mom being her funny quirky self. We would point stuff out and she would giggle and we would laugh and all seemed well. We spoke every night. When she had what I like to call her "break", it was scary. Good thing my sister had begun researching AL facilities, and when we needed to get her in we were ready to go. Feeling guilty is normal, I know I do everyday, and I think it's part of the process of grieving. Try to be brave and strong - cry when you need to. That's what I tell myself. Wishing you love and light from NJ. -