Anxiety from change

oldestdaughter23

I need advice. My 79 year old mom has recently been diagnosed as needing 24 hr. care. My brothers and I noticed small changes in the past year or more. She lost interest in crossword puzzles, struggled to do jig saw puzzles which she always loved, couldn't figure out how to do cross stitch any longer, and when I took her shopping, I noticed how she stuck closer to me and seemed to have a hard time figuring out what she needed for groceries. She wasn't eating properly, she was so weak. I requested a cognitive test from her family physician over a year ago, but she refused to do it. Anyhow, fast forward to now, mom took a fall March 3 of this year which landed her in the hospital for a week. This was also the second fall in a month. While in the hospital, we noticed confusion, but associated it with pain meds she had been taking. She was sent to a rehab nursing facility after her release and while there we continued to notice confusion at times. The therapist gave her the cognitive test while there where she scored a 15 out of 30, they also gave another test which she didn't score well on either. Both tests show that she requires 24 hour care. So recently we were given to ok to move her into an assisted living apartment. I am her POA, and she is currently living in the nursing home where she was sent for rehab. The assisted living room is in a connecting building to the nursing which is nice as her needs increase. She's close to myself and family, and I've been happy with the care she has been receiving and the activities that is provided for residents daily. My problem and question is, mom has gotten used to the staff where she is, and the thought of moving into AL has her all worked up, and her anxiety levels are high. I understand that a lot has changed for her in a short amount of time. She's been a smoker since she was in her late teens and hasn't smoked in the past two months, not by choice. But, knowing she's moving is making her want to smoke big time, she's bugging family members to get her a vape pen, which are not allowed. She threatens to find someone.to take her to town, which I know she can't. She thinks moving to AL is where she will go to die, and why can't she stay where she is in the nursing home. She knows that my brother's and I have started packing up her apartment to downsize and move her into the AL apartment, and she keeps asking if she can come home and go through things. I think her anxiety is so high that it will make matters worse for her. Ive asked the nurse to give her a mild anxiety med to help her. She has it in her mind that she will not the new wing and wants to die. I plan to bring a few boxes of things for her to go through at her new place and planning to have as many things from home brought to her new room to have it set up and feeling more at home in hopes it will help. I need advice. Should I bee concerned with her she's thinking? Do I allow her home where it's a big mess and boxes all over and things gone? It's been a tough couple of months. She's been directing a lot of her anger towards me, which has been hard. I'm praying once she is settled into her new room, that she will be happy. Sorry, so long. But, I feel I have no one that understands what I'm going through.

Shan

Oldestdaughter, I’m so sorry you are going through this, but you are not alone and the people here are so caring and helpful. I can share with you how moves went with my mom, diagnosed Alzheimer’s in 2021, and what did and didn’t work to help you decide what might be helpful with your mom. Like you, we noticed years before our mom was diagnosed that something was wrong. When she was diagnosed in 2021 she also scored 15/30 which meant it was time to move her from her senior community condo to AL. That was a hard transition for her and I’m not sure we handled it correctly for the stage she was at. My sister took her to tour her top 3 facilities months before the move and we started packing up her condo also several months in advance. It all was way too much for her to handle but we didn’t realize it at the time. We thought giving her some say in the move and letting her help pack and decide what to take with would help her transition. Boy were we wrong. It only caused severe anxiety for her. She kept telling us she didn’t like any of the places and she didn’t want to move, she was too anxious and confused to help decide what to bring with, because we knew we couldn’t bring everything. If we packed boxes and left them in her condo with her until the next time one of us went to help pack, we found everything we previously packed unpacked and right back where the items were before. We quickly realized that any boxes we packed needed to be put in our cars and not left with her or we would never be ready for the move. I tried to help her pack her clothes closet and sort through what she still wears and what she wanted to donate, bad idea, she started crying and saying we were throwing her clothes away. As the moving day got closer, her agitation and anxiety was higher than we’d ever seen her. She was crying and telling us she wasn’t going to move and was mad that we were taking her things. Her reasoning was too far gone for her to understand we were just keeping her things until the move. On move day we did one thing right, before the movers arrived, she was brought to one sisters house for the day so she didn’t see them taking all her belongings out of her condo. Me and my other local sister were in charge of coordinating the move and setting up her new AL apartment before she was brought back the next morning. That part we did right too. We didn’t get her room all set up until later in the evening on moving day and since she was starting to sundown we decided it would be better for her to spend the night at my sister’s house so she could be brought to her new apartment in the morning when she’s less agitated. We all want the move to go well and for our LO to assimilate and be happy again, but with this disease we have to be realistic and understand that each move is traumatic and for my mom at least, because she didn’t like change pre-diagnosis, now that she had a broken brain it was so much more difficult for her to process. She never really felt settled there: she had happy moments mixed with times she was crying about wanting to move or plotting where she would go next. She stayed in AL for 15 months before it was decided that she needed much more care and supervision than AL found provide, so the next move was to MC. Using what we knew about how she reacted to the first move, this time we didn’t tell her she was moving, we waited to pack until morning of the move after my sister took her to her house for the day, and we didn’t bring her to her new facility until it was completely set up with everything we thought was important to her. When my sister brought her to her new room the first night, mom was in a full blown panic attack, crying, hyperventilating. Even though we handled the move in a less stressful way for our mom, we forgot to plan the fiblet we would tell her about why she was going to live here instead of her precious apartment. So my sister who was caring for her during the move had to create the story on her own. Unfortunately, the story ended up being something traumatic that my mom can’t let go of. She was told the manager of the apartment she was living in changed the rule about pets and if she wanted to keep her small dog she had to move. My mom’s dog is her life, she got him as a puppy when my dad died and she’s had him for 10 years. She still, just over three months after the move, tells the story of the bad man that hates her dog and physically forced them out of their home. Sorry this got so long, I hope it helps. The main take away is, letting our LO help in the move is usually too stressful for them to offer any benefit. Telling them in advance is also not recommended. And make up a very simple neutral story to explain why she had to move- they need her room for someone who is really sick or fell like she did, or better yet, they are repainting the room and she needs to go to another room temporarily. Good luck and let us know how it goes.

oldestdaughter23

Thank you Shan, it helps to know that someone else has experienced something similar. My gut tells me that having mom go to her apartment and seeing things boxed up, and cabinets empty would put her.over the edge with her anxiety. I feel bringing her things to her room and having it set up is the best route for her anxiety. But, then there's that part of me that questions if we're doing things the right way, does she need that closure? After reading what you have gone through helps me see that we're best not allowing her home. The hardest part for me is how she's so angry with me, and how she's been treating me, especially when other family is around. I am the oldest of 5, and the only daughter. I've always been the caretaker of the family. I'm the one that has ALWAYS been there for her everytime she's needed something. Taken mom shopping, to doctor appointments, out to eat and outings. Now, I'm ignored and talked to very short and with snarky attitude. It's very hard for me. I went from visiting almost daily to just visiting every other day for my own mental state. I'm not sleeping well and feel guilt and anger. It's a stressful time and a lot has changed in a short amount of time. I'm praying that once mom gets moved into her AL room and we can finish moving things out of her apartment that it will help some. Thank you.

MN Chickadee

It sounds like allowing her to return home for any amount of time would be counter productive, it isn't going to help her broken brain understand the reality of her care needs and the need to move. Is this Assisted Living a memory care specific setting? She will need the 24/7 structure of MC, and not all AL offer that. Are you using therapeutic fibs? Maybe say the new setting is temporary. This NH wing she is in is closing down for repairs. Say whatever brings comfort, doesn't need to be the truth. And yes she may be angry with you. Unfortunately that's par for the course as the POA for someone with dementia. She may never be happy. Even in their home of 50 years a PWD can be unhappy and begging to "go home." Happiness can be very elusive especially in the middle stages of dementia. Hang in there, you're doing what you have to in order to keep her safe.

oldestdaughter23

Thank you for you insight. The AL wing she is going to is set up to help her 24 hrs., as her needs progress she will move up to the 2nd floor. Good things to ask though. I think you are correct with not mentioning the move. She seemed to be doing better until recently when moving to AL was brought up. Like you mentioned, her broken brain doesn't understand why she will need to go there and why. The anger is the hard one, and all I can do is pray and turn to you all that have or are also going through this new journey that my family has been thrown into.

Shan

Your emotional pain will be much easier to manage if you can begin understanding that your mom’s brain is permanently damaged and she can no longer reason, think, or even show love and appreciation like she used to. Your don’t need to fear that she needs closure because her brain cannot rationalize closures and even if she could in a moment of partial clarity that may still be possible, it’s likely she won’t remember and seeing her empty or partially empty apartment is likely to cause her more anxiety. I can completely empathize with how you’re feeling about your mom’s treatment of you and hopefully my realizations with my own mom can bring you some peace too. Before my mom’s dementia, we were best friends and talked on the phone daily and still saw each other often. When she first started showing what I now know are early signs of her decline, I had no idea what was causing her to become so disrespectful to me and it really hurt. She called less often, and for shorter periods and often ended with her being angry at me for no reason. I couldn’t figure out what was happening and I thought I was doing something to cause her anger and distancing behavior. Once she was diagnosed, I started reading books about her condition and it was such a revelation to find out that is wasn’t about anything I was doing and even more importantly it wasn’t something my mom was choosing either. The brain changes she was going through caused her to lose her ability to feel and communicate socially like she used to. As she progressed it also caused her better traits to disappear while magnifying her worse traits. While it still hurts to have lost my Mom and the special relationship we had, I can find some relief knowing if she could chose, she wouldn’t want this either: she just has no control of that part of herself anymore. If you haven’t yet, I recommend reading anything you can find on dementia to help you understand your mom and her deficiencies better. Yes, it will always be hard to give and give and not be appreciated and even hated at times in spite of all our sacrifices. But knowing our moms don’t possess the same brain functions they need to remember and be appreciative does help it not hurt so bad, most of the time. I still cry about the loss far more than I want to. This disease causes the worst form of grieving possible. Hang in there and take solace knowing you are still a great daughter to be by your mom through this hell, even if and especially since your mom can’t show her appreciation. I tell myself that my mom is still in there somewhere and she sees me and she appreciates what I’m trying to do for her even if her disease blocks her ability to show me. Hope this helps.

oldestdaughter23

Thank you Shan, To top things off, I just found out that my mom has tested positive for Covid. My family and myself are all very worried since she is/was a smoker for years and has COPD. We lost our Dad to Covid in January of '21. So we're praying she will be OK. Are there books that you recommend to help understand what is going on?

JustPyrfect

Shan - thank you for that response. I just moved my mom to a SNF after a hospitalization for a fall- the 4th in a month! I have known for a while that she would need 24 hour a day care at some point, and the time came very quickly! I struggled with how I would get her out of her apartment into a facility. She also has a cat that she is extremely attached to and is her whole life, and that is one thing that I also struggling with.p - Separating the 2 of them. but the fall and the subsequent trip to the emergency room was the answer. She was discharged from the hospital to a “rehab“ facility. She is there, thinking that this is an “order from the doctor”, and he will not let her leave until she is physically able to walk on her own. Which we all know will never happen. Once she transitions to long-term care, I will need to continue telling her this story. How does everyone Deal with, and manage the constant phone calls and questions about when I can leave? She is very anxious and depressed, and of course, confused. Reading your response helped me a lot this morning. I am struggling with having to leave her there, even though I know it’s the best. I am struggling with the fact that she can sound very logical and normal. I am struggling with the fact that I know she’s not going home, but I am not telling her that. I realize that I am doing this for her… Not to her, but it doesn’t make it any easier for me.

oldestdaughter23

Wow, reading your comment was like reading exactly what I've been going through with my mom. It's been so difficult. The guilt and sleepless nights since my mom's fall. This group has been my saving grace the last couple of days. To read what others have also dealt with or going through, and to help me understand that mom's brain is broken. Things aren't going to be the same. To appreciate the days that are good. I am also new in this group and feel so much better knowing that I am not alone, just as you are not alone. Take a deep breath and know you're doing the right thing to keep your mom safe. ((Hugs))

Shan

JustPyrfect, constant calling and begging to be somewhere else and not wanting to stay where they are safe, and being sad, afraid, and lonely are all constants of this disease that I and I think everyone here struggles with or has at one point. The endless, every 5 minutes, any hour of the day phone calls asking, crying, or begging for our help or attention for which ever is the crisis of the minute can be exhausting mentally and physically. There are two camps of thought on the solution, one is to allow our PWD to keep their phone but purchase a burner phone with a calming outgoing voicemail message for our LO to listen to when they call us, the second is to take the phone “for repairs” that never get done to remove it permanently. We are currently in the third, natural solution, my mom recently lost her skills using her phone. She often forgets to hang up a call or return it to the base so the phone battery is usually dead, and even when it’s still working from us charging it when we visit, she is having a hard time now figuring out the steps to make a phone call. Which leads to another dilemma, is keeping the phone in her room that she can no longer use causing more anxiety than removing it? I don’t have the answer for that yet, we are still assessing and debating. We thought about and even purchased a simple programmable corded photo phone from the Allz store but can’t come to a concession with my sisters if we think it’s a good idea to install it in her room or not. On one hand it solves her anxiety over not being able to talk to us when we are not there, but then it puts us right back where we were when she was incessantly calling us and if we didn’t answer, the voicemails she left over and over were gut wrenching to listen to. But, I also see the other side of the dilemma from residents at her MC that don’t have phones. I see them constantly looking for a phone to use and asking other residents and staff if they have a phone, and several get angry asking why they no longer can have a phone. So for us, for now, letting my mom keep a phone that she doesn’t remember how to use is still the solution. Staff tells us she even brings the handset with her to activities “in case we need to call her while she’s not in her room.” That leads to your second question, what to do about or LO always asking, begging, and demanding us to take them out of where we have found safe care for them. That one is gut wrenching too. The best solution that’s been working for my mom is I first ask her why she wants to move to validate her feelings and so she can feel heard and that I care about what she’s feeling. Almost always in her case, she’s upset because she was trying to feed her dog Angel at a meal and staff did what they are supposed to by stopping her and redirecting her so Angel doesn’t get sick. I reply by telling her I know how much she loves Angel and wants to keep him healthy and that she is doing a good job taking care of him. That usually calms her and she forgets about her first question when can she move or come home with me. If it doesn’t or if her reason for leaving is simply “I hate it here,” which I often hear, I again ask her why she hates it, not so I can convince her it’s a good place because I know her inability to reason will make that approach fail miserably, but again to calm her, let her vent, and show her I care and am not just dismissing her. Then I use the fiblet that still works well, I tell her “we can’t move you today (insert reason if necessary- it’s bed time it’s late we need to find a place you like first etc) and then say “we can talk about it tomorrow and make a decision.” It calms her in the moment and never have I returned the next day to find her holding me to the promise because the moment is over and she’s able to move on, for the time being, until it comes up again and then you go through the same steps again. Because our PWD live in the moment, they benefit when we stay in the moment with them and they don’t hold us accountable for the promises we make to calm them in that moment. If we treated someone with a working brain like this it would be cruel, but for our LO it is actually the most loving thing we can do for them. For us, however, we need to understand that no matter where our LO lives they are going to be sad, scared, lonely, frustrated, angry etc. it is the nature of their condition that no matter where we decide is their best safe place, they are always going to look for “home” as in where they felt happy and whole and safe, and unfortunately no place gives them that all the time anymore. I used to feel extremely guilty that I was not able to bring my mom into my home and give her what she needed, but after trying several times when I was my sisters respite care for long weekends when mom was in AL near her, it was very clear that she longed for “home” and my house still wasn’t and couldn’t be what she wanted either. No matter where my mom has lived so far since her diagnosis, she has moments of contentment with her living arrangement and moments of inconsolable misery. So I have come to terms with the facts that she was miserable living at my house because I have to go to work every day and leave her with a PCA, I can’t quit my job to take care of her (I still have 2 years on my studio lease I would still have to pay and my career because it’s self employment would be over if I was not there to tend to it every day), and even if I did, she still would long for a sense of safety and happiness she had before getting sick, no living situation can provide them with that 24-7. So I had to get my head and heart wrapped around the idea that she is in a good place that keeps her cared for, safe, and provides mental, physical, and social activities that are far better than what she would get isolated at my house while I’m working or sleeping. And I didn’t even touch on the sleeping issues of trying to live with a PWD. That’s another long story for another day. So, to wrap up this long explanation, you are completely correct, putting our LO in AL or MC is not something we did to them to be cruel or unfeeling, it is what we have done for them out of love and care to give them what they need at this point of their journey. Hoping this helps you find peace during a stressful time.

Shan

Oldestdaughter23, I’m so sorry about your loss of your dad and your current scare with your mom’s positive test. I’m praying she will get through it without complications. When my mom got diagnosed, I read everything I could find online and there are some good YouTube videos as well. Teepa Snow on YouTube is an invaluable resource. Some books that helped me understand the disease and figure out how to help my mom include: The Caregiver’s Guide to Dementia by Gail Weatherill, Dementia with Grace by Vicky Noland Fitch. A book that has some good ideas of how to deal with difficult visits with our LO is Meaningful Connections; Positive Ways to be Together When a Loved One has Dementia, by Nancy L Kriseman

oldestdaughter23

Thank you! ❤️