Throw into the deep end!

MNPS

This is a bit of a rambling rant with some questions maybe peppered in it.  I previously did my first post about being concerned about moving my mother, who is 70 with dementia, and father  who is 80 and mentally and physically fine.  Since that post a moth or two ago, my brother and I decided we would fly to their home for our first post-Covid visit and discuss several things with them 1) moving to be closer to one of us and 2) setting up estate planning (power of attorney and medical directives top of list).  We flew together on March 23 to visit, list in hand.  Lo and behold, while we were in flight, dad had a medical emergency and was transported to the hospital.  4 days has now turned into 21.  The last 3 weeks have really laid bare the reasons we need all these plans in place.  When we landed, we knew dad hadn't been feeling well, so we called to check in.  Mom said "Well he was taken to the hospital by ambulance and I need to get there!"  Mom was left home alone, car keys on the kitchen island.  She doesn't know how to operate the phone anymore, because she didn't call us.  Luckily she is scared to drive, so it was easy to convince her by phone that she could just wait on us.  We called her back every 15 minutes or so during the 60 minute drive.  During the drive we finally figured out where dad was and that he was ok.  When we got to the house to pick mom up, I was shocked - my mother looked like she has lost substantial weight and the house was filthy by their standards, dusty, bathrooms filthy beyond all belief, toilet leaking water on the floor, etc.    Dad should be fine, but he will be in the hospital and rehab for multiple weeks.  we immediately extended our trips from 4 days to 7.  My work schedule is more flexible, so i volunteered to stay and take care of mom as long as necessary.  This has included cleaning the filthy house, taking her to and from the hospital 2-3x a day to visit dad, making appointments to get her hair done (it looked terrible, hadn't been done since before Covid), and stocking the house with groceries.  Their pantry looked like a 21 year old bachelor lives here. Mostly empty with a bunch of snack food and that's it.  I'm also managing my dad's various rental properties, handling their bills, and hiring yard people to mow, clean the pool, etc.  

We were able to quickly set up POA and Health Care Directives for both while dad was in the local hospital.  Now I'm having to dig through folders and shoeboxes of disorganized notes and files to figure out what money is where, when what bills are due, and making sure different bank accounts have adequate money in them before writing checks, etc.  I feel like I have suddenly been thrown into the deep end of caregiving.  All of this while learning more and more about my mom's mental state, which has been pretty shocking.  I say all this to let people know they shouldn't delay - have the talk, get the POA, get the directives, find out where everything is hidden like keys to safes, checkbooks, etc.  When the caregiver has a medical emergency and the only one left at home is the person with dementia, it is nearly impossible to figure this stuff out.  

I have figured out that mom's mental state is worse off than I thought - she has absolutely no short term memory, she can't remember that we ate lunch at a certain restaurant minutes after we ate there, she thinks she took her medicine when she obviously didn't.  She sleeps in her clothes (including shoes) a lot of times unless I go in her room and bug her about it.  I don't think she has showered since I've been here.  When I ask her if she wants to take a shower she says "Oh I will in the morning" or "Oh I will tonight".  My dad is definitely in some sort of denial if he thinks she's fine to be left alone or drive from time to time after what I've seen in the last three weeks.  She pulls things out of the pantry and places them on the kitchen counter for no reason.  She constantly paces at night checking the door locks, making sure lights are off, etc.  Most concerning is that she refuses to eat much.  She eats half a sandwich for lunch and tries to have the second half for dinner.  When i push her to eat more she snaps at me.  I bought her some high calorie ensure (my husband is a physician and suggested this) which she seems to like, but will only drink one per day.  

Dad has now been transferred to a larger hospital 3 hours away - about halfway to my brother's home city.  The docs there are saying that dad will likely be in the hospital for 1-2 more weeks, then will need to transfer to a rehab facility to build his strength back up.  We are hoping (and maybe some of you can advise us) that we can find a place such as an assisted living in my brother's large home city that they could both temporarily live in together - mom could be watched after and dad can be getting his rehab.  That would give us a reprieve from full time caregiving, but still be close enough that we could visit regularly.  Ideally they will be able to live on their own again, but hopefully this will paint the picture that we want dad to see on why we want them to move closer to one of us and to perhaps divest themselves of all of the distractions like the rental properties, etc, and allow people to come in and help.  I think dad takes on too many things himself, he mows the yard, repairs any and all things that are broken, etc..  He needs to delegate some of this to other people and quit trying to do it all.

 So...for the questions: does anyone have advice on the showering?  I'm her son, so I won't feel comfortable forcing her to get naked and into the shower and I'm sure she wouldn't like that either.  Luckily she doesn't  smell or anything.  How about the eating?  I keep encouraging her to eat, and maybe the ensures will do a little to help with daily calorie intake, but I think she needs help on that front.  Any thoughts on how difficult it will be to find a place that will take both of them - one where dad can do rehab and mom can be watched after?  Preferably sharing a room or apartment of some sort?   It may need to be a place where he can be medically monitored like a long term care hospital, but more of an assisted living so mom could be there.  Does such a place exist?  

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dayn2nite2

Agree with the above.  Her condition and the condition of the home indicate that your father hasn’t been capable of her care or his own for some time.  They both need something more than assisted living at minimum.  

The rental properties will be interesting.  Their condition and whether tenants have been paying them will add to the picture.

You may be looking at getting their place and their properties ready for sale and a move for both.  Dad’s acute hospitalization and then to rehab, see if your mother can be placed with him and then a discussion about what you found financially and the condition of the house.  Whatever money they get from sale of the properties can be used for their care.

abc123

I’d be concerned about my Mom being near a swimming pool. Victoria made some excellent points. I’m sorry this has happened to your family. I know this is hard on so many levels. Good luck.

towhee

Please check to see if they have a long term care policy, and if they do make sure the premium is up to date. 

It is possible that the condition of house and bills is due to your father being exhausted by looking after your mother. But- dementia is not just memory problems. It is lapses in judgement, inability to complete multistep tasks that have always been done, staying a course of action even when others provide good reason not to. Before your father leaves rehab, he needs to have a through workup by a neurologist. Please discuss this with your fathers' doctor. Let this come from the doctor, not from you. You need to keep that POA.

Do you know when your mother last saw her doctor? If it has been more than a couple months it would be good to get her an appointment. Her lack of appetite could have a medical cause. Even if you don't get her an appointment, you need to give her doctor a copy of your HPOA, inform them of your fathers situation and ask for a consult to be brought up to speed on your mothers condition. They need to be informed on the condition of the house, food situation, and your mothers condition, but you don't need to be telling them these things in your mothers presence. They can give advice on steps to take next.

You got POA. Easily. That was a blessed gift. You say your father is not going to be able to handle his affairs for about two months. Put aside any thoughts about what your father might or might not like and USE that POA.  Showers? Call a home health agency tomorrow, tell them you need someone for companionship, light meals, to help your mom shower, someone experienced with dementia, vaccinated, for at least 3 days a week for 2 meals a day. She might eat more if it is a social occasion. Don't tell her it is because she needs help, it needs to be in some way to help you.

Would it be possible for you to hire a property management company? Even if you decide to sell it will take time and you do you want to manage multiple properties long distance? There will never be a better time to make changes. You can blame everything on medical issues and your job.

It is a very good idea to have both your father and mother in the same area, but not in the same room, not until your father is through rehab. There are continuing care retirement communities where a person could be in memory care (at full price) and their loved one could be in rehab in the nursing home section.  However, some memory care do not accept short term stays, so you will have to do some research.

Wish you well-

MN Chickadee

I would be looking for a senior compound CCR type of thing with varying levels of care. Assisted living is a broad term and can mean different structures. Sometimes it's housekeeping and a once a day med pass or something like that, others do offer higher acuity services for early dementia stages that may work to keep them together for a while. Some would be able to offer rehab on site. Having dad transferring from the hospital to another facility is your opportunity to get them moved. Dad is either completely over burdened by her care needs or his mind is also compromised, given the state of the home and finances you found. And presumably they knew you were coming, so this was the best he could do for house guests? Clearly they cannot live alone in the home anymore. It sounds like you got there just in time to avoid crisis.


The local chapter of the Alz Assoc in whatever area you want them to land can give you a list of facilities to start with and narrow down from there. Also in person (in this case probably on a zoom) support groups often have valuable advice on good places to move them to. An elder law attorney in said area will be valuable, not only to have a relationship with as things come up with the move, property, estate issues, but often they have a handle on what facilities might be a good fit for a particular set of circumstance. 


My mother also lost a lot of weight when she was at your mother's stage. Try to offer many high calorie snacks during the day.  A balanced diet was less of a concern over just getting her some weight on, so it wasn't totally junk food but not super healthy. We had nutella on a bagel, a milk shake, a cookie, whatever she felt like eating. It may help if you share the snack together and make it a social event, not just you forcing snacks on her telling her to eat. 


As for bathing, if you feel you can't do it yourself I would get on care.com or find a local agency and have a hired aide come to the house and do it. If you are in an area that has adult daycare, some do offer bathing as an add on service as well if you get her enrolled while you are staying there. She likely cannot do it herself anymore. This is typical for the disease and someone will need to be in there with her coaxing and directing. There is a wealth of knowledge on this site, come back and ask more questions. Good luck.

jfkoc

When is the last time each saw a Dr? Excluding the ones seen in the hospital.

harshedbuzz

I lived something similar and wrote you a long post which was swallowed at 4am this morning. Mom had surgery this morning, because the caregiving never ends, so I couldn't circle back around.

You've gotten some great advise so far and gotten some of the stickier parts of this done. Kudos on getting the legal stuff done and working collaboratively with your brother- you're ahead of where I was when the feces hit the fan in my family.

A couple thoughts-

A CCRC would be ideal, but often they require a big financial buy-in, so you want to be absolutely certain than it's a good fit for both.

That said, some CCRCs do not extend invitations to PWD to join their community- it goes against their marketing and business model as an "active adult community". I wanted this for my parents and dad couldn't pass the admission evaluation of the only place mom would consider.

Putting them in a hospitality model AL is likely to be a poor fit. Dad would still be responsible for hands on care of mom. It sounds like she needs at least personal care or memory care level services- perhaps they could be in different parts of the same community allowing them to spends days and meals together while dad can get some respite. 

It's important to tour each part of the CCRC- the IL or AL where dad would live and the MCF and SNF associated. Sometimes the lower acuity care parts are very nice and the others sort of mediocre. There was a physician caregiver at mom's IRL support group who did rehab at the CCRC we liked after TKR and was not dazzled by the quality of care; he went elsewhere for the other knee. They were kind to his dear wife when she went into SN, but there was no special dementia training or activities which meant he had to make things up for her.

It doesn't sound as if dad is up to being a caregiver. He can't get your mom showered, the pantry has potentially unsafe food in it, the house is dirty and he didn't have the necessary legal docs in place until you and your brother made it happen. 

Moving them near you or your brother makes sense. I moved my parents after an emergency much like the one you described. The hospital near their place in FL called me as an emergency contact when mom went into an auto-immune liver failure and nearly died on dad's watch. I called daily to check in and he told me she was napping and crazy or lazy- never once did he mention she was the color of a school bus. I was able to fly down where I walked in on dad hosting happy hour wearing nothing but a bath towel. 

One difference is that the house was a little messy as mom had been sick for over a week, but the house was clean, the food in the pantry and fridge was safe to eat, the lawn was mowed, cars maintained and the household bills current. Only the stuff for which dad was responsible -his investments- were messed up. Dad lost $350K day-trading; I would look into anything he normally handles.

I would have a neurology consult before moving forward. It is very possible that you have 2 parents experiencing a cognitive shift but haven't noticed dad's issues as they aren't as obvious as mom's. 

HB

King Boo

Wow.  I am pretty impressed.  Right off the bat, you made the decision to move Dad to a hospital near a family member (AWESOME).  This will let that family member monitor and become advocate for him.

Which, may be surprising news, but Dad needs someone almost as much as your Mom.

Couples often develop a sort of co-dependent 'masking' when one has dementia or aging.  They 'cover' for each other.   Until things fall apart and neither can recognize the need for help or a crisis.

Do not make the mistake of dreaming that when Dad is patched up and well again that he should be in charge of his household alone.  He is elderly, compromised in judgement, and will most likely be very decompensated and weak physically despite the rehab.   Leave him his dignity, don't have "The Talk" that many mistakenly do.  But take the reins.    Get online access and put your DOPA on all financial accounts, take over the rental properties or hire an agency to do so.  Warning - banks can be a PIA about DPOA's so do it now - you may have the option of having Dad sign the banks paperwork which they often prefer when he is discharged.

DPOA's are done, you say?  Excellent.  It is the critical tool you need to take the reins.  Was the lawyer you saw a CELA?   www.nelf.org      Long term care planning is needed and a good Cela can guide you so there are assets for both Mom and Dad.   

It's dreaming to think that Mom will be cared for under a simple AL model (unless it is an AL in name only model, but is actually almost a Memory Care.  This happens sometimes due to state requirements, etc).

By the time refusal to bath hits, this is the hallmark of the nee for Memory Care and was mentioned to me by every single facility I looked into for my parents.    Mom is also impaired enough that she probably has little safety awareness so you need a level of care that tracks their residents whereabouts, not a setting where she can come and go freely.

Keep focused on evidenced based care needs and not the wishful thinking that we adult children dream of, you will be fine.

It hurts.   And now you know Dad is far beyond where you thought he was and declining too.

Present all the care options as 'just for now'   'while you are getting stronger' 'for Mom just for a bit'.

Many have had success with hiring a female aide to help with showers.  Making the bathroom a soft, spa like environment.   Covering the mirrors (they can loose the ability to realize it is their reflection and think someone else is in the room).  Fragrant soap, soft soothing music.     A motivational tangible reward "We can have ice cream after you shower".  "We can go see Dad after you shower."  "Shower is for church.  No shower, no church".  

MNPS

Thank you all so much.  We are in week 4 now, I haven't seen my home, my husband, my dog, or worked a solid day in 4 weeks.  My brother has only seen his kids for a few days here and there.  This is truly one of the worst situations I've ever had to deal with.

I also found out that dad hasn't told mom's siblings or friends what is going on with her, so I'm doing that as they call.  The funny thing is, they have each said "well we had noticed....."  They have worked pretty well as a team covering for each other!

I made the mistake of taking mom to visit dad for a few days - spending 4 nights in a hotel with her, dragging her to and from the hospital - was absolutely the worst idea ever.  She was stressed the entire time and it wore her out each day to the point that around dinner time she would forget my name.  So now I've brought her home and I'm letting my brother handle dad.

Dad gave me permission to sell one of the rental properties, so I now have to deal with getting that ready to go, but I'm happy to do it and  I'm hoping that leads to more selling off of these distractions.  We have lightly discussed moving them closer to my sibling when this is all over, and he seemed very agreeable, so I think we are moving in the right direction.  Now if we could only get him out of the hospital!

My husband says mom needs memory care now, in his medical opinion, as have many of you.  Her weight is down, she's not showering herself, etc.  She thinks her kindle is her phone, which she doesn't know how to operate anyway.  He thinks dad probably THINKS he can handle it all, but he obviously can't and it's not doing mom any favors.  That will probably lead to WWIII with dad because he's a notorious tightwad and won't want to pay for it

I had Visiting Angels come do an assessment, and I may have them start coming in a few hours a day until we figure out a more long term solution in the coming weeks.  That would at least give me a few hours a day to work remotely and handle getting things around here sold, cleaned up, etc.  

I read through a lot of posts on the forum - I realize we have it pretty lucky right now compared to a lot of people.  Mom isn't so far gone that she's aggressive, she isn't incontinent, they have plenty of money for care, I have work flexibility, etc. It is just a lot to get thrown at me all at once when I wasn't expecting it.

Thanks again everyone.

Mom's Baby

MNPS, so much of your story sounds familiar! My mom was also the one with dementia, and my dad had the physical issues. They did just fine independently until Dad fell one year (he was 87 and in heart failure after having a bypass 20 years earlier). We knew Mom had dementia and she was supposed to be on Aricept/Namenda (note: supposed to be). I talked to them every week and tried to see them every 2 weeks, but they would come to my city (about an hour from their home), so I didn't have much need to go to their house. Mom didn't say much, and Dad would keep conversation going. I knew this was due to her dementia and not wanting to "say the wrong thing." I told Dad that if things got out of hand for him, he needed to let me know. Of course he didn't. 

After Dad fell and was hospitalized, we realized how bad things really were. Like your parents' house, theirs was also a mess, and my mom had always been a meticulous housekeeper. Both were losing weight. The thing was, Mom had stopped cooking and cleaning. She'd just sit in her chair all day and the two of them would watch whatever was on TV. Dad was not feeling well due to his worsening heart, and he had no energy to do anything. He also couldn't wrap his head around changing their "roles." He'd always done outdoor work, fixed the car, etc. Mom took care of the house and the cooking. When she couldn't do it anymore, it just didn't get done. So while it's possible your dad has cognitive issues, I could also believe that he is in the same situation as my dad was. Not feeling well, wife isn't herself anymore, he doesn't know how to perform both his household role AND hers. 

I asked Dad about her medications when I couldn't find them and he said, "I'm not giving her those anymore." WHAT? Too expensive. I went and refilled the prescriptions right away, although I think now it was probably too late for them to have much effect. 

Anyway... I feel for you - my dad was a tightwad too, and trying to get him to move from his house of 35 years was NOT going to happen. Unfortunately, he ended up passing away in his sleep 3 months later. Then, Mom became my responsibility (even though I'm the youngest of 5, I was closest to them and everyone expected me to do it.) 

It sounds like you are doing everything right. You've gotten a lot of good advice, so one thing I can say is to just try to eat this elephant one bite at a time. Make a list of things that you know need to be done and give yourself a timeline. If you can achieve one thing on the list a day or a week, you will feel like you're making progress, and that's key. It can be so overwhelming when you're faced with this situation seemingly out of nowhere. And, please do hire some help, whether that's Visiting Angels or some other agency, preferably one with caregivers experienced with dementia. It's a special kind of disease, and not everyone handles it well. I learned a lot from being on these message boards about keeping Mom calm, not being freaked out when she acted strange or forgot the simplest things, didn't behave at all like the mom I had known for 40 years. Fiblets and redirection are your friend. 

Best of luck to you on this journey. My dad passed in 2010 and Mom passed in 2016 after spending 5 years in memory care. I miss them every day, but I'm so glad that part of my life is over. 

MNPS

Lots of great updates.  Dad is still in the hospital, we are now in our 5th week.  He isn't really getting better, but he's not getting worse, either.  They are talking about releasing him to skilled nursing in the next week or so.  Mom and I have a pretty good routine going, I've started to understand what stresses her and what keeps her sane.  And I am ready to go HOME.

Brother and I have found an assisted living, within a mile of his home, and within a mile of one of the largest medical centers in the united states.  The cost is high, but we are framing it as temporary, which it could be for dad, but probably not for mom.  We did all the legwork prepared to be fought on it, but Dad has agreed with no fight, and mom almost seems relieved.  I think she knows she needs help, she always seems worried that she's going to have to make decisions on her own, or go somewhere on her own.  I took her to the doctor to fill out initial paperwork last week, she has lost 15 lbs. since last October, down to 108 lbs.  Obviously this can't go on.

Dad also agreed to sell the rental properties - these are all vacation rentals, so they are pretty easy to sell since you don't have to worry about displacing tenants.  I sent off the first listing agreement this morning.  Getting the second one ready to sell, in addition to taking care of mom, but just glad there is progress.

The only thing dad is not wanting to sell are the excess cars and the house, but I think with enough time, those will stop making sense to him as well.  Main step is getting them both to my brother's city so at least one of us can check in on them every few days.  And knowing that they will be getting meals, etc., is a big relief.  It makes me sad that mom is doing this so young, she just turned 70, but it's for the best. 

mommyandme (m&m)

So glad you can see through the storm a bit.  Thank you for the updates!

aod326

What amazing progress you've made in two weeks! Well done and continued good luck to you.

MNPS

Sad to report that dad passed away over the weekend.  Friday we were making plans for his release, then Friday night things suddenly changed and he never recovered.  I had their car packed and ready to leave for the AL on Saturday morning.  I was going to pick him up on the way and get them moved in this week.  The doctors felt so good about his health that they were going to allow him to go straight to the AL instead of Skilled Nursing.  Things were looking so good, then suddenly they weren't.   We got the call Friday night and had to rush out of their home at 3am, drive the three hours to the hospital where he was, and sat with him for the final 36 hours of his life.  Obviously we are all very sad, though I must say that mom seems somewhat disconnected from it, which may be for the  best.  Now we are jumping straight into what is going to happen for mom.  Within 3 hours of his death we were on the road to my brother's city.  The one bright spot is that we can start making decisions that will be permanent, no more questions about going back to independent life.  The AL was very accommodating and allowed us to change from a two bedroom to one.  I admit when we drove over there Monday morning to show mom around, I broke down in the lobby.  She seem so confused about what we were doing even though we have discussed it with her repeatedly.  It's so much change, so fast.   We are going to use the money we are "saving" since dad won't be there to pay a sitter to come be with her for 4-6 hours a day.  I'm hoping my brother and his kids will be able to visit enough to keep her happy.  I know we are making the right decision for her, it's just so much so fast.  I don't know how long AL will work for her, but the facility has a memory care floor, so she can move there when the time comes.  

We decided to delay doing any type of service for dad until the summer.  It's just too much to even think about right now.  I think we all just need a break after the last six weeks.  I am finally going home this Saturday, but will come back in two weeks to move more of her familiar furniture and art to her new home.  What a ride this has been and will probably continue to be!

MN Chickadee

I'm so sorry for your loss. You must be reeling. I'm glad you were able to be with him and say goodbye. Your mom may not always remember he is gone, and she may decline now without him. Many here tell the PWD once or twice someone has died but if they forget then quit telling them. It only brings repeated grief for no reasn. It sounds like you have a really great plan to meet her needs. You're doing a good job. Hang in there.

Marianne*

MNPS, I'm so sorry for the loss of your father.  There's just so much for you to think about and move through you don't even have time to process anything.  I liked the advice Mom's Baby gave earlier in a response to, "eat this elephant one bite at a time".  It's all just so overwhelming and then to lose your father too.  You're doing great.  I hope the break at home gives you some much needed time.  Again, so sorry for your loss.

dayn2nite2

I don’t think anyone could have seen the turn this situation took.  I’m so sorry for your loss.

As you have noted, your father’s departure from this life has also enabled you to put into place some permanent changes, sell the outstanding items and use that money to ensure your mother’s care.  In a way, he’s still taking care of things.

I think getting your mom settled and waiting to do the processing of your dad’s death is a good idea.  With this sudden event and the need to keep your mom moving forward, don’t be surprised if you totally collapse for a while after the immediate crisis is over, and you may find the best you can do is get back to work and little else for a bit.  Be kind to yourself and don’t force activity or events that you don’t feel up to.  

Klgm326

I am so very sorry for the loss of your father. I recently went through a similar drastic change in my mother. Losing her in the middle of it all would have been so heartbreaking. You are in my thoughts and prayers.

MNPS

Mom is moved in and comfortable, if not a little confused about it all.  But we know she's safe now.  And I was finally able to go HOME after nearly 7 weeks away.  So strange to be away from my own life for so long, but glad I could do it for them.

She did NOT like the caregiver/sitter idea and sent the poor lady home the first day within 2 hours.  "What am I supposed to talk to this stranger about all day??  It feels so awkward!"   So we are going to respect her wishes on that and drop it.  We are a little concerned about what she must be doing with her time - is she just sitting there staring at the wall?  My brother has been stopping by 2-3x a day to check in, and each time he says she has her bed made, the tv on, and the blinds open, so it's not completely silent and lifeless in there.  Plus people are always stopping by to give meds, bring meals or take her to the dining area, etc.  My first night back home I was so worried about her, but that feeling is starting to recede a little as more days have passed without incident.  My husband pointed out that mom probably wasn't doing much at home either, the only difference is that dad was there and there was more "stuff" for her to fidget around with.  The first few mornings, she repacked her suitcase and said she was waiting for dad to show up so they could leave, so she definitely doesn't remember what's happened.  We aren't reminding her, just repeating "Oh, don't worry about him, we want you to stay here a little longer".  I hope that works.  She wasn't very emotional when he was dying, I think that part of her brain must have been affected, because I know they loved each other.  She seemed more upset that we were upset.

I definitely feel like a zombie now, unsure what to do next, but working on the list of major tasks ahead.  Glad I can vent here, because I don't think even my husband truly understands what this feels like.

dayn2nite2

If your mother is in an apartment-style assisted living, her level of dementia may be beyond that level of care and she may do better with a more communal type of living arrangement (roommate) where staff isn't just "checking in" and giving medication but actively engaging her and taking her to and from activities.  

How is she getting her meals?  Is she being taken to a communal dining room?

I'm confused about the level of care she is in currently because it sounds like she is allowed to just sit in her room all day with no social engagement.

MNPS

She is in apartment style assisted living.  We thought dad was going to be there, too, so when he died we didn't think about what that difference would mean.  We wanted to let her be as independent as she could for as long as possible.  The facility did their own assessment and felt she would be fine here, but my brother and I have already been discussing moving her to the memory care floor in the same building for the exact reasons you describe.  Some days she scares us because she seems to have no clue what is going on, but then others she puts together an entire puzzle herself and has the presence of mind to feel awkward about having a stranger in her apartment.  She has always been a bit of a loner in many ways, so I'm not so concerned about her being alone as I am that she won't have anything "to do".  That's why we hired the sitter, to make sure she was being taken on walks, joining in the activities listed on the calendar, etc, but not going to force it if she doesn't like it. She is taken to a communal dining room for meals every other day, on other days meals are brought to her.

May flowers

It sounds like you have thought everything through and have a good setup for her with the sitter. I’m glad the facility also has MC, so when that time comes she will already be familiar with it. Some folks at my FIl’s MC unit moved there from AL in the same building, so they are taken to some of their activities to visit friends they had made in AL which is nice. 

My FIL is an introvert but with his dementia and macular degeneration, being alone isn’t something he enjoys as he used to because he cannot entertain himself anymore. He does not (cannot) enjoy TV, puzzles, reading, going online, so when he is not around people, he slips into a state of inertia - sitting, staring, wasting away. Being around others, even when he does not participate, seems to make him content. When we were leaving the other day he asked us to take him back to the group, which years ago would not have been the case.

Sorry for your loss, by the way. You have gone through a lot recently. I’m glad you are home and able to recharge some.

Jmeidinger

Solidarity my friend.  I feel where you're at.  When I first moved in with my mother to care for her, I found myself working very hard to walk the fine line between "Controlling Nazi" and "Invited Houseguest."

We also had no POA and nothing in place.  My sister and I are currently going the laborious route of becoming my mom's guardians.  My mom's FTD made her so unbearable she had driven all of us children away from her before we really realized there was something very wrong.   Man do I wish we had all been more involved to get her on a POA.  But she was insufferable.  And now we all have regrets.

So speaking from my experience as the son of a mother with FTD advanced into both alzheimers and vascular dementias due to diet problems...

 Check what kind of medications your mother is on.  My mom has type 2 diabetes.  Because she'd been having problems so long her doctor had her on multiple appetite suppressing drugs.  It got so bad that she crashed in January and wound up in the hospital and in hospice.  Which means we cut off all drugs.  And she bounced back like crazy.  We have the opposite problem now, she wants to eat constantly and put on over 10 pounds in the past month.  She's much happier without the medications than she was with.   And as we and her new doctors say ... "It's not like she's going to get better.  Let her be happy."

Mainly I wanted to address this tho:

" I'm her son, so I won't feel comfortable forcing her to get naked and into the shower and I'm sure she wouldn't like that either.  "

You'll find you need to just get over it.  I tried to avoid it.  And my mother wound up with heat rashes that caused MAJOR behavior problems and started a new cycle of drugs like Haldol that made it all worse.  Once I got over my inhibitions and checked my mom for injuries and found a rash in her groin, I told myself I can't have these hangups anymore.  I mean, as her son, obviously I wasn't in favor of checking her groin for rashes.  But now, for her health and for my own peace of mind I do force her to have a shower at least once a week to make an inspection for anything similar to get ahead of it, and I try for twice a week.

And once that line is crossed it's all downhill.  I help her with her bra, getting it on and off on a daily basis.  (I've helped her twice, taking it off and putting it back on just while typing this message out.  She likes to change clothes several times a day.)   I help her with showers.  At some point in the past couple of months, I started having to help her wipe going to the bathroom and that's just where we are now.

She never batted an eye by the way.  It just is what it is from her perspective.  I figure she did all these things for me when I couldn't.  Now I'm doing them for her.  It's a part of life.  It sucks at first.  It REALLY sucks at first.  But it winds up just having to be done.  

 If you find you can't do it, you need to hire an aide to come in and do it and request that they check for rashes.  I do think that's an important part of how I care for my mom.  Making sure she's not in pain that she can't communicate to me.

MNPS

Mom is now 3 months into her new living situation and doing just fine.  It was rough at first - I don't think she knew what to do.  We have a video camera set up in her apartment so we could keep track of her coming and going, and it was quite depressing.  She just seemed to walk in circles, checking door locks, wiping counters, etc.  Much like what she was doing at home.  Now she seems to have gotten the hang of the schedule, so she leaves at meal times on her own and sometimes will be gone for the entire afternoon.  One time when I was in town visiting, I found her with a table of ladies in the dining area.  I'm sure she may not have much to offer in the way of conversation, but I'm so glad she seems to be adapting.  Most importantly she's gained 12 lbs!

We sold the rental properties, estate saled the goods at their house, and currently their home is for sale.  Finally seeing the light at the end of the tunnel on all of that.

Still not much improvement on bathing, though I now have her going to the on-site hair salon once a week for a wash and style, so at least her hair won't look greasy anymore.  We also got a new aide that spends 3 days a week hanging out with her, taking her to the various arts and crafts classes, etc.  Will keep pushing the aide and the facility to work on the bathing.

My brother lives nearby, at first he would take her out to dinner with his family every Friday night, but he's dropped that.  He said it only seemed to confuse and stress her, and I can imagine that's true.  He does go by and visit every other day if not every day.  

She still doesn't remember what happened to dad, and that's probably for the best.  We just redirect if it ever comes up.

So thankful for this forum.  Preparing for the road ahead!

M1

Good to hear the update, you've gotten a lot done and it sounds like she's settled in as much as possible. What a busy few months to say the least....

eaglemom

Thanks for the update. To say you've been busy would be an understatement. I think you've gotten things at least under control which has to feel good.

eagle

Emily 123

Great to hear!

abc123

Dear MNPS, I’m am very sorry for the loss of your Dad! That must have been incredibly shocking and sad. 

I hope you realize how many good things you have accomplished for your mom and dad. I would imagine you are completely worn out physically, mentally and spiritually. After spending two to four weeks at a stretch with my mom, I feel like a piece of burnt toast. When I get back to my home in another state, I usually spend several days alone with my dogs and sleep a lot, pray a lot. When I have the desire to start working in my yard, that’s usually a good sign that I am starting to regroup and bounce back. This certainly takes a lot out of us. 

I hope your mom continues to settle in at the facility. You and your brother are a great team. What you two have done is priceless in my book! Job well done. You have my respect and admiration. I hope you are finding time to charge your battery and get back into the groove of living your life. Good luck to you!