Covid Confusion....Ugh!

Tfreedz

Update - My brother has finished his isolation period of 13 days. Disinfected his room,clothing,bedding etc. Noticed he still has a mild cough and very runny nose that he has trouble keeping up with. I did call the Dr to ask if he is still considered contagious and need to be isolated for longer. Dr. says it is doubtful he is still contagious (they don’t know for sure) and these symptoms can last for months! I’m hesitant to have him out and about in our common living areas and around my mom who just recovered from pneumonia and my son who is immune compromised, especially since my brother’s hygiene (lack of) is an issue. Everyone is vaccinated, including him, am I being paranoid? Should I keep him isolated longer? He loves being in his room and waited on with meals, but does miss sitting with family in the evenings.

So my brother who has Down syndrome tested positive for covid today after we noticed a cough and runny nose. My mom (with dementia), husband, teen son and I all tested negative. All are vaccinated but our son could not get boosted due to his age (14) and has compromised immune system. Brother completely understands isolating in his room, content with tv, dvds, and getting served his meals at his door. Problem is...mom cannot remember or grasp why he needs to be isolated. I explain it, she seems to understand, then she’s in his room maskless “checking” on him! We’re now resorting to having him lock his door to keep her out which she is completely against. She has been crying and rocking obsessively in her chair in her room. We were going to get her in a memory facility this month but now with exposure, that is out for awhile. She keeps trying to remind me that he is disabled and she’s worried he will fall out of bed! He’s never fell out of bed and is more “with it” than she is right now. I’m mostly venting but if anyone has any ideas of how I can convey to my mom that he needs to be isolated, I’d welcome the advice!!!

Daughter80

That sounds so rough. I am very new to all of this, but have some ideas. Maybe you could put a sign on the door. DO NOT DISTURB, SLEEPING…..something like that?  Have that be why she can’t go in?  Maybe even a picture of someone sleeping or even a picture of him sleeping on the door? Maybe a stop sign? Just ideas. I had read that people with Alzheimer’s can still read until later stages, but may mix up meanings so using a simple one or two word direction with a picture. Since the door is locked that definitely keeps her out, but the signs could maybe help you help her. Again, Just ideas, but might be worth a try.

Tfreedz

Hi Daughter,

Thanks for responding, I think we had the same time frame (about 4 months) if I remember correctly since our moms were  diagnosed. I will try signs like you said on the door tomorrow. I’m a little doubtful she will notice them since I have labels on all of our doors and she doesn’t seem to notice them even though I’ve pointed them out and highlighted them. Same with the special “dementia” clocks I have around the house that have date,day and time of day. She still asks me those questions, I point to the clocks when I answer and then she remembers. It’s still worth a try though so we’ll see if it works. I’m also kind of hoping she forgets all about it in the morning. Unfortunately, when my brother is not right in front of her (and even sometimes when he is) she forgets all about him. In this case, that might be the most helpful thing to happen while I discreetly feed and check on him.

Hope things are going ok with your mom and aunt. Have you tried anything new lately that your aunt agrees with?

harshedbuzz

Tfreedz-

That's a lot of moving pieces.

Firstly, I hope your dear brother does well with the virus. 

As for your mom, I would consider reaching out to her PCP for a short-term prescription of some sort of benzo anti-anxiety medication to use for the duration. As the parent of a son with DS, she would be hard wired to have special concerns about his health that would persist well after she was able to fully understand them or do anything to mitigate them.

If you could take the edge off that anxiety, it would be a kindness. 

HB

Tfreedz

I never thought of an anti anxiety med harshedbuzz, that’s a great idea!  I’m going to play it by ear today and see how she is before calling her PCP. You are spot on when you say she is hard wired regarding my brother and his disabilities. He is 48 and since her dementia has progressed she has reverted to treating him like a toddler which is very upsetting to him. She also keeps “reminding” me he has DS which of course I’ve known my whole life..it’s just part of her confusion thinking everyone else is confused. Thanks again for the tip

Daughter80

How did the day go?  Hoping it went better. You are correct that we are both 4 months in.  So sorry for all you are going through.  So much on your plate.

I met with my aunt yesterday and we had a good talk and I am hopeful we will be making some changes here soon. Unfortunately she has hurt herself and that is taking priority at the moment. Thank you so much for asking.

Tfreedz

Oh no, I’m so sorry your aunt has hurt herself!! Maybe this will lead into her being willing to relocate to AL /MC with your mom? It is so hard to caregive for someone with cognitive issues and will definitely take it’s toll even on a healthy person. I hope something positive comes of her injury in the long run.

Today was a much easier day for my mom dealing with my brother having covid and being isolated. For the most part she seemed to forget about him for the majority of the day. She did see me bringing him a meal once and asked  if she could speak to him through the door, which was completely fine, so that worked out ok. The rest of the day she was content to read and discuss news issues on the TV. So glad her anxiety and confusion seemed to be forgotten about!

Daughter80

Tfreedz, How are things going? How is your brother? So glad to hear that your mom was doing better and not remembering the need for anxiety with your brother. I was able to find a resource by me that provides free consulting and we will meet next week. It is a social worker and like a case manager for hospice, but for seniors and their families as they age. This is exactly what I needed since I am feeling like the case manager of all that is happening and at the end of the day we are family and all have to work together on all of this. I really wanted a third party, go to person.  I’m hopeful that we will be headed in the direction of adding care however that looks. I also cut ten hours from my work schedule that will start next week so I have more time to help and be with mom. She can still have conversations and I want to have as much time with her as possible now before things progress. Prayers for you, your mom and brother.

Tfreedz

Hi Daughter,

Things are going pretty good. Brother is feeling better but according to health department needs to stay isolated until this Thursday. Mom has mostly forgotten about it all so that helps since she couldn’t understand why she couldn’t go into his room. We have a zoom assessment for a MCF on Thursday and I’m very stressed about the upcoming move to a facility. I know she is against it but I really think she will love it in the long run. She is very sociable and loves to be around other people so that’s what I hope will win her over. Due to covid in our home, our caregiver can’t be here so it’s been hard on my family. I’ve missed my son’s b-ball games the last 2 weeks, so I know the move is necessary.

So glad to hear you are getting a third, neutral party involved. It might be easier for you aunt to take suggestions from a professional and take the weight off your shoulders. It’s awesome that you were able to cut some hours at work and will be able to spend more time with mom! I’m sure as much as you can take her out even for a long drive it will be helpful to her sister and her. I feel closer than ever to my mom going through this and treasure every moment I have with her and I’m sure you feel the same.

Let me know what suggestions the care manager has for you next week, I might be able to get some tips as well!

Daughter80

Wow. So hard all around. Trying to be there for your child and then doing a move to MC. Have you visited MC facilities?  What is your feeling about them?  When I started the search I just couldn’t do it. I was already a wreck with just moving my mom out and finding a place. People on here have said that MC was a great move for their LO. I pray it is a perfect placement and that your mom settles in quickly and enjoys the company. I think that would be good for my mom. I totally understand and hear you on treasuring the time you are having. I took my mom to Target today and she bought a winter coat with her own money. Pretty sure she hasn’t shopped or spent her own money in more than 2 months. She cried about 3 times because she was grateful to be able to go out and shop and spend her own money. That just shows me how much she needs stuff like this. When we got back I had a conversation about care and I did it!  Care will start hopefully next week for at least once a week!  

You’re a wonderful daughter, mom and sister. So much, but you’re still there. Working to do what is best for everyone. That’s a hero in my book. Sounds dorky I know, but really isn’t it true? Blessings. 

Tfreedz

Aww, thank you for the super kind words! It is super hard sometimes, like this week she has refused to shower for 8 days! Today she got in there so I am happy, I tried so many different things and just don’t know what will work until it does. 

I took about two months to tour about six different memory care facilities. Mom can’t be left alone so I had to do it when a caregiver was there or go without my husband which I didn’t want to do. I was royally disappointed by the MCF that was 3 minutes away. It was not a good fit, everyone was slouched on chairs/couches looking very much out of it. I guess they were just way more advanced than my mom. My mom is only 70, very physically fit and chatty. They had an AL side that was awesome but staff wouldn’t consider it for my mom because they were concerned she would exit seek. Another place that was highly recommend but was so new and sterile (and pricey) it just felt cold. I only saw one resident as the rest were in their rooms and it felt like the sales team was just looking for money. There were a few in between but I just didn’t “feel it”. The one I fell in love with doesn’t look sparkling on the outside but it is clean and homey on the inside. One of the nurses has raised her 2 little dogs there and they are just prancing down the halls. There were a ton of activities and happy looking residents walking around. They also are willing to try my mom on the AL side first. Since both sides were great, I am feeling very hopeful. They had a few different community kitchen areas that residents can make things for themselves with oversight. Also an enclosed outside area that residents can use all year, most others are closed in the winter. My mom loves the fresh air even in the cold so that was important. I will update when the move actually occurs and how it goes, super stressed about that!!

I’m so glad you had a nice outing with your mom! It must have boosted her confidence picking out and buying her own coat. I hope the caregiver goes well next week and your mom finds that she has a new friend to talk to. Have you ever thought about AL for your aunt that has a MC attached for your mom? I saw that at some of the facilities I looked at, family members that would go between the two areas to still spend time together. How is your aunt doing with her hip and with all of your intervention? Is she accepting your help a little more now? Keep up the awesome job you are doing as a daughter and niece, I know if it isn’t said..it is still appreciated!!

Daughter80

Sounds like you’ve found just the right place. I think going with your gut is so important. I love that the residents look happy and that they have an outdoor area accessible year round. Sounds perfect.  

I found some places that had AL and MC. Two were fancy and I definitely got the feeling they were just out for money. I only visited three that had both. One was nice but had super long walks to get anywhere which would have been too much for my aunt. We were trying to keep everyone as independent as possible and spending as little as possible to make sure we were able to stretch what they had for as long as possible. My mom is “early onset”. Diagnosed at 65 but we can see that it had effects on her a few years before. I do think I need to start looking again. I also discussed moving to AL as an option just last night. Basically that or adding care asap so I’m glad we at least are starting with something soon. My mom seems so aware at times  and tells me about how it’s hard even where she is because she is so much younger than all of the people at the IL facility, which is true. I wonder if people with dementia ever tour and select their own MC or if you usually wait until they are further along. She can’t be alone and has no idea of some things yet she seems to totally understand other things. 

How is your mom's awareness?  Does she like to be social?  What ended up working for the shower?  My mom told me today that she showered every two weeks. She was totally serious but obviously clean thanks, I’m sure to my aunt’s prodding. 

Tfreedz

For the shower, she usually says no thanks, or I just took one which I know isn’t true. When I asked her if she wanted to shower before me or after.. that usually works but not this time. Today right as she was going into the bathroom, I said “I put two fresh towels in there for your shower” she said ok and got right in, lol.

Most times my mom seems really aware and with it, to the point I question myself and her diagnosis. But then I give her lunch and a few minutes after she says she’s going to have lunch and gets a couple of pretzels. She lost about 30 pounds or more over the last year and living with her I can see it’s because she doesn’t think to eat, also doesn’t remember how to cook. She got down to 100 pounds at 5’7”! I was so frustrated and told her if she didn’t help me make decisions with her future I would have to do what’s best, she said, “ok, I trust you can do that”. She has anosognosia which is so weird to me, I always thought she was in denial about her memory loss. She seems to have no memory after her teens, doesn’t remember her career,marriage, my childhood, wedding, birth of my children that she witnessed. When I ask her about that, she says it’s normal for a 70yr old to forget. She knows who I am but when I leave the room and come back she asks if I had a good time while I was out...after only a few minutes. 

I wish I could involve her in the decision of her placement but she has been adamant that she only wants to live in her own home which is 30 mins away from me. Doctors say she needs 24hr supervision so that’s nearly impossible for me to arrange in her own home. She doesn’t know how to work the phone,remote,tablet,microwave etc....She was doing all of those things in August, now she can’t drive or even care for my brother. I’m pretty sure she wasn’t doing that well before August but she kept me at an arms length. She says she doesn’t want to go to a facility but I’m hoping that will change once she is there. If not, I’m willing to bring her home and try something else but I hope it doesn’t come to that.

How aware is your mom? Does she realize she has dementia? Is she willing to be involved in planning her care and living arrangements? Would she remember if she did? Any sign of stress shuts my mom down, talking to her about her future completely stresses her so now I just avoid it.

Daughter80

Good one with the “fresh towels”!  Your mom definitely got tiny. My mom was almost 400lbs most of my childhood. She was probably 250 before this all started and is now 170. It’s so weird to see my mom tiny.  Same about the mental clarity. Sometime she seems completely fine then she will ask the same question or tell me the sam things again. I had to get her marriage license and she didn’t remember where she got married. Not even the state. She thought her brother died 20 years earlier than he actually had or she gets lost looking for the bathroom again. My mom was on her own in August as well. I’m sure she wasn’t doing well but lived close to her sister who drover her places and cooked for her already.  My mom never really cooked and she had two bad accidents and vision trouble so she stopped driving. It was all Alzheimer’s though. I know that now. I wonder if I should include my mom. She could help decide but I also am afraid of scaring her. You know?  I guess I thought it would be very clear as to when she would need to go to MC but it isn’t sounding like that. My mom struggles to do things like use a microwave, remote, turn on the water etc. she is so lucky that I have my aunt caring for her at this point. Who knows what would have happened if she hadn’t. We loved across the country. Now she is aware she has dementia, but I’m not sure she always is aware. She told people for a while that she did and that it was because of a brain bleed from a car accident. Not true but we just let her say whatever. No point arguing. She seems to not be aware at other times and if a doctor talks at all about decline she is always shocked and cries. Hurts my heart. So I really don’t know what to do as far as having her a part of the decision. I would be ok if it were AL. Not sure about MC. I’m going to visit a MC place next week to just start the process. Maybe if a find one or two that are nice I could take her to visit. I’ll talk to staff there as well to see what they advise. When is you mom’s move date?  Definitely will be praying the move goes as well as possible for you both.

Tfreedz

We don’t have a move in date yet. The facility is doing an assessment on my mom tomorrow then Monday she goes to her own doctor to have him fill out all the medical paperwork and give her a PPD. All this without me telling her what it’s for makes me very stressed. I will post how it all goes!

Did the caregiver come in this week, if s how did it go?

Daughter80

That definitely does sound stressful.  I wrote letters that I handed doctors to try and get them to not say things that would trigger my mom. No idea if that might be helpful for you. 

Care was able to start this week, but we are hoping for next week.  This Friday we have the meeting with a social worker and next Friday I just scheduled a visit to a MC facility.  No idea what to expect.  Was visiting hard?   

Tfreedz

Great idea, I think I will try handing the Dr a note! I hope the SW can give you some direction. The one assigned to my mom gave me a list of facilities and offered to help me explain it to her on the day of the move if needed. 

Touring the different facilities was interesting. I mostly wanted to see if the residents looked happy and if the places looked and smelled clean. There were a few top choices so I had to go with my gut and of course finances. 

I look forward to hearing how your MC visit and SW visit goes!

Daughter80

How did the assessment today go?  That’s so nice that you have a social worker to help. Where did you find a social worker?  I found an agency for aging and they have free services so that’s where I found our help. I am afraid to visit MC because I was afraid of seeing people not doing well. I’m afraid I will cry at the visit. Actually makes me cry even writing this. I only have experience visiting nursing homes and they scared me as a kid. Plus it just feels wrong with my mom being so young. She doesn’t really look elderly to me. Hope your mom’s assessment went well.

Tfreedz

The assessment went so much better than I expected. I was so stressed that she was going to ask what is was for and I don’t want to lie to her. At the end of the assessment they asked her if she had any questions and she said, “I love being with my daughter but I just want to go home to my own home, I forget simple things but I write them down so I don’t forget and it’s normal for my age.” I felt so bad for her, I wanted to cry. They said that sounds like a lot on your plate and then goodbye and she didn’t mention it further. I called them to see what they thought. They told me my mom should go on the MC side because she looks like she could be a visitor and just walk out the door if she was in AL. They also said they didn’t think she would be happy in MC because the residents are much older and not as active as her. They finally decided to try her on the AL side with the condition if she tries to leave she has to move. She has a move in date of Jan 24th!!! I was super happy about that but when I dropped off the deposit, they gave me a 30 page packet she has to sign on many pages before the 24th! This now has me super stressed because I know she doesn’t want to go to a facility. She only wants  to go home and that isn’t an option...which of course she doesn’t understand. I guess I will call the SW to see if she can help but I will wait until closer to the date, no need to stress her too soon. I cried the entire way home from the facility because even though I believe it is the right choice and place, it hurts so much to not give her what she wants.

The SW was assigned from a memory clinic my mom was referred to by her PCP to get her diagnosed originally. Most cities and big hospitals have memory care clinics I believe. My mom met with a neurologist there and had a bunch of testing to determine FTD. The doctor and sw meet privately with family first to get a total picture of what is going on. Maybe you could find one in your area for your mom. Before that I did get referred a care manager through a lawyers office but found out it was quite pricey. 

I get the emotions, mine are all over the place! You’re fortunate you have some help with your aunt and don’t have an urgent need to move her ( I think).  I really hope your meeting tomorrow goes well and you get some direction.

Daughter80

I am so glad it went better than expected.  Hugs.  You are definitely doing all you can and it is absolutely heartbreaking that you can't just do what your mom wants.  I totally understand that. You should be so proud of all you have done and all you continue to do.  

Can you just sign the papers for your mom if you are POA?  I am curious about this since my mom personally already struggles to sign her name and I have no idea when I will have to do this for her.  Plus you are making these decisions in her best interest and if it were her decision she would not be able to make the best decisions for herself at this time.  Just a thought since there seems to be no need to upset her with signing paperwork when really this is something you have to do for her.  

So hard that it was not an absolute AL or MC placement.  I feel like my mom would be very similar.  Your mom is 70 right?  Only 3 years different so being the young one at a MC facility would be the same.  

I talked with my mom tonight and told her that I would be meeting with my aunt to discuss counseling needs because I just wanted to help my aunt and her not fight.  My husband is going to take her to the DMV to get her ID and handicap placards for our cars since we get her many times a week.  She said she would enjoy being out with a hot guy...lol.  What a crazy time of life.  I am feeling absolutely at the end of myself because I have two small businesses, teen daughters and now all of this with my mom and aunt.  I am working to cut back but it will take time to feel the effect.  And sleep....do you get any good sleep?  My mind never turns off.  

Keep me posted as you work towards your move in date.  Hugs and prayers again.    

Tfreedz

Oh my goodness, you have a lot on your plate! I don’t know how you are surviving on no sleep, businesses to run, family and getting your mom several times a week! I also get very little sleep because my mind won’t shut off. I lay awake stressing over every possible scenario and if I am doing things correctly. I’ve had to write lists to remind myself why my mom can’t go back to her home and also why she can’t stay with us. I’m completely drained as I’m sure you are as well. 

I will call the facility Monday to double check if she really has to sign it or if I can with POA. I don’t even want to think about it until next week. It took her hours in the law office months ago to sign the POA because everything is very confusing for her.

I was fortunate to retire at 44 from law enforcement two years ago. If I was still working when this came up it would be impossible!! Neither one can be left alone at this point. My brother can be difficult to deal with, kind of like having a six year old in the house. At least his Covid symptoms are gone now and no one else in the house got it. 

It’s so nice of your husband to take your mom to the dmv so you can handle some things, sounds like she will enjoy it also. I’m interested in hearing what suggestions the SW has for you today, I really hope something good comes out of it. You haven’t mentioned if your aunt has been agreeable to all of this or not. Hopefully she is accepting your help and ideas.

FTDCaregiver

With the covid mess right now, my DW likes seeing short video clips on my Iphone of people she can't visit with in person.  With her memory loss, I show these to her again and again, over the days, it's like she's seeing them for the first time and really enjoys both hearing and seeing faces of loved ones. Good tool for me as well when her anxiety increases.

Daughter80

You’re definitely doing the best for your mom and family. Such a hard decision. And that’s amazing that no one else in your house got covid. Hopefully you can just sign all of the paperwork. Make things a bit easier on you. 

The meeting went well. I think it was the first time my aunt was really able to just vent and I’m sure she needed it. She is beginning to accept the help. The SW was wonderful. Caring and gave us lots of resources. A therapist, websites, phone numbers, vouchers for 12 hours of care. We will hopefully start with one, two hour day of care next week. I tried for this week but they couldn’t get anyone. My aunt took my mom to happy hour. That was awesome. She was so happy. That’s what she wants. To get out. Be social. And really she can only handle a short time, but I think she needs this. The SW said that when we can no longer be the relationship (sister, daughter…) and only the caregiver we need help. He said anyone can do the care, but only I can be the daughter or my aunt the sister. I really liked this. They fight over getting laundry done and I thought…..then care should come and do laundry with mom. Let that be something they no longer fight about. I thought of this last night and will share with my mom and aunt. Hopefully she will be open to this. I think it should help them both. 

Stuck in the middle

Daughter80 wrote:

The SW said that when we can no longer be the relationship (sister, daughter…) and only the caregiver we need help. He said anyone can do the care, but only I can be the daughter or my aunt the sister. 

That is the perfect answer to the recurring "Is it time?" question!  

Tfreedz

FTDcaregiver - that’s a great idea, I’m definitely going to do that for my mom. She has some friends she can’t see due to Covid and I never thought to do that. I know she will love it just like your wife does. Thanks for the suggestion!!

Daughter80-I am so happy the SW had such helpful ideas and care vouchers(wow!) sounds like you hit the jackpot with him. Therapy might be a good idea also, I’ve been contiplating it myself. Awesome that your aunt took mom to happy hour, maybe with some relief on the way she is feeling a bit less stressed. I agree with the socialization, this pandemic has definitely put a damper on that and I can see the difference in my mom. I hope/think when the caregiver comes in it will make a huge difference especially if they help your mom with tasks such laundry like you said. It will (ideally) give your mom a boost of confidence and maybe give aunt some assurance that it’s getting done correctly without her help.

Stuck in the middle- agree that is a good way to think about when it is time to get help or relocate (one I never thought of...)

Daughter80

Tfreedz,  I tried to send a message directly to you, but deleted you instead. Not sure if messaging someone is possible. Anyway, how are you guys?  Is Monday still move day? How are you doing?  I wanted to send you flowers Monday but obviously don’t want to have your address posted. Just know you will definitely be on my mind Monday. 

The caregiver came yesterday and took my mom to the grocery store. She sooo appreciated it. She told me thanks about 4 times. It made me cry. We can all take such little things for granted. She was so happy to go buy apples and bananas. Definitely needed and I am so grateful for how awesome the guy was. Mom said she felt like she had known him forever.  

Tfreedz

Aww, thanks for thinking of me! I’m not sure how to private message here either, but I do think others can have input that may be helpful to both of us. 

Monday is coming real quick and I have a pit in my stomach about it. First I was stressed that they wanted her to sign a ton of things ahead of time. When I called to see if I could sign it for her as POA, they said no but that as long as I signed in all of my representative spots and drop it off today, she can sign it on Monday once she’s there. I don’t know what will happen if she refuses.

Yesterday I mentioned I found her a wonderful home away from home, where there are tons of activities, people to meet and squirrel feeding. She said sounds great for when I’m 90. I said well actually we are going to try it out this Monday and she said I don’t like this at all, not one bit. I wasn’t going to mention the place until Monday, but I hate the thought of lying to her and I also felt awful just springing it on her. I’m not going to mention it again because of her negative response. She was off kilter for the rest of the evening but I don’t think she remembered why and went to bed early. This morning she woke up at 6:40 am all upset that she overslept...

Anyway, I’m trying to remain strong and keep telling myself this is for the best because I’m afraid I will cave at the last minute. I know my family would like our home back to normal so this is the first step. Brother getting into a group home is the second step. I have a list for my own sanity of why my mom cannot go back to her own home that I need to keep looking at since that is her greatest desire.

Your mom’s caregiver sounds like a Godsend!!! I was hoping she would get someone good. What a relief you must feel knowing someone else is interacting with her in a positive way. I’m so happy for you! I had hoped for the same out of our caregiver who did start out interacting with my mom but now just sits on the couch on her laptop rather than talk with my mom. I don’t say anything because I’m so thankful to get out of the house for a couple hours but it is so disappointing. Like your mom, my mom is very sociable and wants to talk to someone new but I don’t think that’s happening anymore. You might not have to worry about moving your mom again if she can keep getting the stimulation of being with someone else that pays attention to her in a positive way. So very glad you found and set this up for her, you are doing an awesome job helping your mom through this awful journey.

M1

Will be thinking of you on Monday Tfreedz.....

Daughter80

Man I can only imagine how you are feeling. You have so much on your plate and you are doing what is best.  Still, so hard. What have others said about how to do the move day?  I have heard people say that their LO adjust and liked it quickly. It really sounds like you have pick such a nice place. And since your mom wants to be social, I am hoping she is able to enjoy company and activities.

martadydaz000

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