Feeling sad, mad, frustrated, and all that goes along with moving LO into an ALF.

VABrwneyegrl

Hi. I am new to this forum. I have been on the Dementia / ALZ journey with my Mom since 2019. She was still living at home on her own until this June. Up until then I had taken over managing all of her finances, going to her house every week to buy groceries, setup her pills for the week (and check to make sure she has been taking them) and in general take of things around the house that she can't do anymore. I also used those visits to get her out of the house to go shopping, have a meal out or just drive around because we had to take the keys to her car away in 2020 because she was getting lost going to familiar places. The last 3 years have had ups and down and multiple hospital visits. She had a TIA in 2020 and diagnosed as MCI by her PCP. Finally connected with a Neurologist in early 2021. After exam, lab results and MOCA test, Mom was diagnosed with early ALZ/Dementia. Medicare paid for at home rehab with physical therapy, occupational therapy, and speech therapy, which she responded to well. But that only lasted about 3 months, then Medicare said she had improved and no longer needed therapy. She again went along with good, and bad days. Mostly having issues with remembering what she was trying to say mid conversation, or would forget a particular word she was trying to use, but otherwise was still able to get up on her own, shower, dress, feed herself, do laundry etc.... in late 2022 she started having dizzy spells and several bouts of UTI. Then, she had some severe dizziness and headaches. Several ER visits where she was released the same day with inconclusive tests. Then in late May she had several bad hallucinations. She had been having only auditory hallucinations for the last 3 years, which the Neurologist prescribed Seroquel for. But then she had begun to have visual hallucinations and didn't tell me until May. That is when she began seeing dead people. Like she saw my father, who has been deceased since 2002, dead in her bed and wanted to call the police to report a murder. And then she was afraid to come out of her bedroom one morning because she said there was a dead person covered in a white sheet lying in front of her bedroom door. (Neighbors went over to reassure her there was no one there.) Then I called one morning, and she was freaking out because she was dizzy and nauseous and wanted to call 911. So, I did. After 8 hours in the ER and a battery of tests that all came back negative or inconclusive, they finally ran an MRI and found a legion on her parietal lobe. They admitted her saying she likely is having or has just recently had a small stroke. But then took 7 days to conclusively (in a very vague way) diagnose as having had a small stroke. During her stay, she was struggling to feed herself, needed help toileting and her speech and memory had significantly deteriorated. The hospital recommended rehab. So, we transferred her to a rehab. There, in the beginning, it seemed like she was improving somewhat. Especially with her strength. She was getting physical and occupational therapy 2x a week and speech therapy once a week. Then, it's like a switch got turned off and she became combative, and she started having problems swallowing food. I had noticed when I visited that it seemed like she wasn't chewing her food all the way like she used to and informed the speech therapist. Then one day she started choking and spitting up clear/whitish foam. They were supposed to be giving her something for Acid Reflux, but I don't think they were giving it to her regularly. The nurse told me there is nothing they can do; she just has to let the foam come up and work itself out. Her mood and combativeness increased, and she started eating less and less because each time she tried to eat she spit it back up. I was already making arrangements to move her into an ALF near my home and had them transfer her directly there. 2 days after arriving at the ALF, I get a call that they've called EMS because she started choking while trying to eat breakfast (her first full meal there). New hospital, new doctors, new process. They determined that she had probably aspirated while she was at the rehab. She had the early signs of pneumonia and she clearly had something stuck in her esophagus. She had an endoscopy the next day and they found food lodged in the esophagus, which they were able to push into her stomach. They also determined she had esophageal ecclesia. The treatment is Botox injections, balloon to stretch it or laparoscopic surgery to correct. After they got her blood pressure under control, 2 days later, they sent her back to AL. Then I got another call 2 days later that she's headed back to ER for the same problem. Her BP was in the 200s / 100s. They had to wait to do another endoscopy until after the BP came down with meds. Again, food and foam/mucus trapped in esophagus. Cleared, but determined she needs a procedure. So, if you're playing along.... She went from ER to Rehab to AL in less than 4 weeks. In AL she had only stayed 2 nights before she was rushed to the ER. Spent 5 nights in the hospital. Then 2 nights in AL then back into the hospital for 5 more nights. So, she has had no time at all to adjust to all the changes that occurred and now her ALZ is even worse. I feel like she moved into the later stages of ALZ (Moderate (6)). She hasn't been bathed in 3 weeks. Fighting with the staff at AL when they dress / undress her. She wears a diaper full time which she hates and because of the esophagus issue, they have her on clear liquids and pureed food. Now, she keeps telling me they are trying to poison her and that she won't eat that "spit". So, she hasn't had a full meal since the end of June. How long can a person survive on spoonsful of applesauce, being used to give her medication and some sips of water. I'm at a loss and while I have been very strong and organized dealing with everything from finances to meds to doctor appointments for the last 3 years, these last 2 months have been harder on me, and I am suffering. My nerves are shot, I dread going to see her. I have had to stop going daily. My stomach is a mess, I can't sleep. I'm second guessing all of my decisions to move her to the AL. I'm in the middle of having sell her house to pay for the AL. Thank goodness I am already POA, but still, it's a lot. And now the AL wants to move her into there MC unit… so more change. Oh yeah, I have a full-time job with a very high-profile project that requires me to give presentations to leadership weekly - so I kind of need to be on my game for that.... Ok, I think I just wrote a book. I’m just wondering if the second guessing and my physical reactions are normal? Do they get better over time? I heard that Hospice or Palliative care can be brought in earlier these days. Anyone have any recommendations?

KAnai

I’m very sorry that you are going through this. I hope you have some help from family members. I would like to tell you that it gets easier, but unfortunately that just isn’t true. I was the primary caregiver for my Dad (who had Alz) who passed away in Dec. 2018. My Mom was diagnosed with Alz in Jan. 2019 and now I’m her primary caregiver. The whole Alzheimer’s journey is extremely hard and it’s important to take care of yourself too! I deal with daily chronic pain that continues to get worse, as well as Medication Resistance Severe Depression. Even though caregiving is a 24/7 thing (no matter where your loved one lives), sometimes you just have to make yourself take a step back and concentrate on self-care for a while.

I never stop second guessing the difficult decisions that I make for my mom. My mom lives in a memory care facility and cries all day, every day because she wants to go home. It is heartbreaking to see her like that and hard to go visit her, but I just have to keep reminding myself that she is safe, clean and fed 3 meals daily and she is exactly where she needs to be. I know that I have done the best that I can for her.

Hospice can definitely be started earlier than most caregivers realize. Definitely check into it. My Mom is on hospice.

Keep taking care of yourself and get help from your family if possible.

mkyriss

I’m pretty new to this journey. My dad has had dementia that has been slowly becoming more obvious over the past few years, but was masking well enough that he was living alone (3 hrs from the nearest family) until 3 months ago. At that time, he injured his shoulder and I went to stay with him, thinking I was just going to help with his shoulder for a few days and instead seeing his dementia was much more severe than anyone realized. In the past 3 months he’s been in the ER 9 times (including one visit that turned to a 3 week hospital stay), moved to AL, then rehab for a month, and now memory care. It’s seemed so sudden to our family and has been very traumatic as I’m the only one close enough to help so I have to do everything by myself. I second guess all decisions too, and he’s currently very unhappy with his new MC place. He’s called me multiple times today upset and wanting me to pick him up. I’m sorry you’re going through this. I have no advice as it’s so new to me but all the empathy as it sounds like we are in much the same place.

usernamesarehard

I'm also pretty new to this.

My dad is 82 and was living alone, in an apartment 5 minutes away. We moved him across the country 2 years ago because he wanted to live near me. For 2 years, I've been watching as he shows more and more signs of cognitive decline. I've been worried for months that something catastrophic would happen. I was actively working on finding an assisted living facility for him, since he fell getting out of the shower 5 weeks ago and called my name until his neighbor heard him and called me.

I went to take him to a doctor's appointment 3 weeks ago and found him naked, awake, and delirious. Couldn't talk to me. Didn't know who I was. Couldn't put briefs on, couldn't stand up. I called 911, we went to the hospital. UTI? No. Stroke? No. Severe malnutrition, dehydration, and possible alcohol abuse? Yes. He is still pretty lucid but his ability to assess risk is bad, apparently he was not feeding himself properly, he is getting increasingly paranoid and delusional. (There are many other signs, but those are the ones that this incident has brought out/to the surface.)

Then off to rehab, where he was furious and agitated, constantly eloping until they transferred him to a facility with a memory care unit. He was diagnosed with vascular dementia while in rehab. He is now in a very nice, dedicated memory care assisted living place. It might be temporary -- placing him there was a decision I made out of desperation, and it's possible that once he's been there for a while and calms down, they will reassess him and say that assisted living (not memory care) would be fine.

If my dad was able to live with someone full-time then he could stay home, but we don't have access to that (it's just my husband and I). The hospital and rehab were pretty unequivocal that he could no longer live alone.

It's been 12ish days that he's been in MC. At first, he was absolutely FURIOUS about being there. He thought that my husband had told doctor's that he (my dad) is an alcoholic and was carted off to the hospital, and that was the beginning of all this. (Note: I have told him numerous times what actually happened. He kind of listens and then goes on a rant about how he is NOT an alcoholic.)

However, in the past few days, he seems to have settled a bit. He loves the food, which helps a lot, and I think he likes the staff there. He told me that he could see himself living there for a portion of his life, but not under false pretenses.

The whole thing super sucks. I have second-guessed my decision to put him in memory care because he is pretty lucid and doesn't need help with ADLs. But he absolutely cannot manage his own finances anymore, nor apparently can he cook and properly feed himself. He doesn't clean. He wears the same clothes day in and day out. He sleeps in his clothes. He sleeps at odd hours. He seems to be having new troubles using the phone, something that makes me VERY nervous in the case of an emergency. Etc etc etc. I can't be there all the time, he can't live with us, same old story.

So, all of that is to say that I'm so sorry for what you're going through with your mom. Like you, I feel blindsided by how quickly all of this happened. I second-guess everything. I had terrible anxiety when he was being moved into MC. I couldn't eat. I felt sick. I walked thousands of steps because if I stopped I wanted to throw up. I cried all the tears in the world. So, yes, at least for me, there was definitely a physical reaction to the stress.

I don't know what else to say. Do you see a therapist? That's been helping me. Also, what about an online support group? I attended one once and have every intention of going back once my work/therapy schedule settles down.

charley0419

I’m just starting this journey with my wife. Diagnosed 10 months ago I started her in a clinical trial after 2 months I felt doing nothing for her plus she hated going so stooped went to dr and was put on meds but got side effect so stopped. She doesn’t want to take anything for this is in complete denial. Was told last week not to drive that didn’t go well. Right now she’s just forgetting shirt term and asks same questions. Gets confused a lot. Is it a bad thing to not take any meds at all for this??

Emily 123

Hi charley, You can use the magnifying glass on the upper right hand side in the purple area to search for the name of the specific meds--that will take you to threads where they are discussed. I think the meds sometimes are a 'Can't hurt, might help' kind of thing. I would discuss with her provider.

You can ask your question on its own by selecting the yellow 'new discussion' button at the top right of this thread's heading - you might get more replies that way...