What happened here today

Rescue mom

So thankful to hear your are home safe. You must be beyond exhausted, in all ways. Rest for the caregiver —for you— is what’s needed now.

M1

Yesterday will go down in my memory book if not hers.  Her internist was great, as usual, helped me figure out the next steps.   There used to be a geripsych unit at the hospital where he practices (my former site of practice too), but the part I didn't know was that the unit had been closed.  The other two choices in town were equivalent medically, both required going through the ER, so that's where we went.  She had no clue; he told her her blood pressure was really high (which it was) and that she needed further evaluation for that.  

The hospital we went to has a whole psychiatric hospital with a geripsych wing.  Unfortunately, that means that they have a lot of psych patients in the ER too, and yesterday happened to be a particularly bad day:  when we were waiting, there was a big drama with a police and ER personnel chasing a suicidal patient outside who had escaped.  I knew then we were likely in for a long day, and sure enough, we were.  There were so many psych patients in the ER that we became one of seven--in addition to four or five more in rooms--who literally had to wait for admission in the ER halls.  It was Bedlam, literally and figuratively.  There were two actively manic psychotics on either side of us.  My partner, who is not a patient person to start with, became increasingly agitated as the day and evening went on, and only wanted to go home.  I asked for a dose of Seroquel, but they either wouldn't or couldn't.  Fortunately, I had brought her pain pills for her back with us (I've learned to do that over the years), so I could keep that under control until they took my bag and her clothes away; apparently psych patietns aren't allowed any personal possessions in the ER.  That then became an obsessive focus; for the next six hours it was "where are my clothes?" every two minutes.  Neither one of us had had anything to eat or drink all day; the only thing offered was a single cold hot dog and grape Koolaid.  Laughable if it weren't so sad.   Also laughable and even more ominous:  they wanted to do her intake interview over Zoom.  She had absolutely no clue.  They also then wanted me to do it in the hall, in front of her.  Ha. Didn't happen.

They've just called this morning, and she was agitated most of the night.  That's all I know so far.  She was put down as a voluntary admission, and I can visit once a day, for 45 minutes at dinnertime.  I can take food.  That's surely to become another problem; I know she won't eat the hospital food, and then I know she will get constipated on her chronic narcotics.  These are the little pieces of good care that will get lost in the shuffle and will end up hastening her deterioration, I can guarantee it.

They are calling now.  That's all I have, so far.

abc123

I have no words to describe my sadness for you both and all the others you saw yesterday. 

A cold hotdog. Oh my God.

loveskitties

I am so sorry that an already difficult day was made even harder by the ER and all those other folks.

I hope that your LO gets much needed help and that you can recoup your own mental and physical well being.

jfkoc

thanks for taking the time to update.....

toolbeltexpert

M1 it sounds like a nightmare but your a real trooper for your care of your dw. I will continue to pray for you.

DrinaJGB

Your description of the chaos at the ER the other night (BTW---FULL MOON)--reminds me of being a charge RN at an acute psych hospital.

 Every full moon was Bedlam.Some worse than others, but always completely surreal.

Good luck to you on this journey.

Jeff86

Thank you, M1, for taking time to update us.  I am so sorry it was such a challenging admission process.  That said, you persisted, and you got it done.  This was critical, as hard and as sorrowful as it is.  While the care can’t match the devotion and attention that you’ve been providing, your partner will be safe and you can have some respite.  

We continue to support and carry you.  Your strength and dedication are inspiring.  

Marta

M1. I placed my husband in MC after two weeks in the psych hospital. Are you considering same?

M1

Yes Marta, I think we're probably headed straight for MC now.  I spent all day on the phone and filling out paperwork.  Am touring my first choice facility Friday morning, trying to arrange the financing, making sure our lawyer son in law reads the fine print--all those things I've learned here.  I don't have a second choice yet.  The SW there may be able to help me with that.  They are anticipating 1-2 weeks inpatient stay, which is about what I expected.

I talked to her briefly this morning, she knew me, wants only to come home, thinks she's been there three days already.  Spoke to two nurses, the doc, and the social worker through the day.  She's remained very agitated and anxious--no surprise.  Tried to fill in her life story for them--fun to be able to brag in a loving way--and give them things like the. names of the pets, etc. so they'll have things to talk about.   They were all surprised at her cognitive reserve and her age--she looks no where near 81.  Everything metabolic was completely fine, so this is disease progression, as we thought.

Turns out there is no visitation yet.  And I don't know when is the best time to call.  I've been so busy today that I haven't.  I don't think I can bear it tonight.

While we proceed with placement, I also still have a sense that this may be the beginning of the active end.  She is willful enough to just stop eating, and I still have a hunch that is what is going to happen.  We'll see.  I am going to try to sleep tonight and will call in the morning.

The good news:  I have propane.  And I have dear friends, including here.

Those who don't know it might look up the derivation of the word Bedlam.....

Ed1937

M1, I'm glad it looks like placement is pretty much a sure thing now, but I'm sorry it's so hard. I know you are very concerned about what might happen, but you have no choice. Hopefully she'll surprise you, and take to placement very easily. Whatever happens, we're here for you.

M1

thanks Ed.  But here we go down the medical rabbit hole, just as I predicted:  Despite multiple warnings and admonitions from me and speaking to everyone I could possible speak to, she didn't get her pain medications as scheduled yesterday, and guess what?  She had withdrawals last night and got combative.  Completely preventable, makes me so angry I could spit.  Their excuse:  "Well we hadn't gotten her medication reconciliation done yet."  

The mercy is now that she doesn't remember it.  But surprise surprise, no one from the unit has called me back today.  They should be embarrassed.

I understand that nothing is perfect, but preventable problems just chap my A**.  These folks who have no one there to advocate for them are so, so vulnerable.

Have to vent here, because nowhere else to take it.  I'm so sad and upset.  

Stuck in the middle

So sorry, M1.

I spent most of a day in an ER with my son last week, and the things I saw going on would be beyond belief if it was my first visit.  It's all so unnecessary.

Jo C.

Oh M; how dreadful.  I can only imagine the anger and frustration that must have caused.  With my LO who was placed in GeroPsych, I found one way to ensure things got done in a timely manner was to contact the psychatrist who was primary on the care and have him write a specific order; sometimes with a specific time frame for getting whatever done  - that made things happen in a much more timely manner and kept things going in a straight line. More or less.

Are you able to use your medical title such as:  "This is DOCTOR So and So calling to screen orders and  assess what is happening with patient, Ms. So and So.   And if there seems to be a response to your title, (shame to have to do that), then firm, steely resolve that things get done in an appropriate manner.

Sometimes when things seemed to be slipping a bit sideways due to staff issues, I was able to have the Psychiatric Social Worker step in to get things done and settled.

When we are healthcare professionals, we are built for caring for others; we are built for fixing things; for making things happen; and then we become part of the other side of the system and it can feel so helpless.  We want to be able to set things to rights and to, "make things better," only to find out that we too can be impotent in the face of such challenges.

You have been an amazing partner striving mightily to do so much to the nth degree; hang in there, you are keeping an eye on the situation and I am sure you will be the ever marvelous advocate you have always been and that makes a difference.

May you also find a good setting that you are comfortable with for placement after GeroPsych care.  M; we here have a bushel basket filled with hugs just to be sent your way.  Might want to put a couple in your pockets to have handy when you really need one.

Let us know how you and your dear partner are doing - we truly and deeply care,

J.

abc123

It’s a shame when a patient has to suffer because of red tape. I totally get the Chapped A— remark. Hang in there M1! You are doing a great job for her.

M1

I heard today she's being very quiet and keeping to herself.  No surprise there.  She seemed to know me on the phone, wants me to come pick her up, doesn't understand why she can't come home.  She did eat last night.

Tomorrow is tour day at the MCF.  I still don't have a plan B.  I have to start thinking about packing and what to take, wherever it is going to be.

M1

The tour went fine.  It's the best in the area, of that I have no question.  Three connected living groups, all behind one secure door which is hidden so that they don't have a lot of exit-seeking.  Each living group has its own kitchen where three meals are cooked and snacks are always available.  There's a resident tuxedo cat (her favorite), an aviary, aquariums, garden, art studio.  At least I now have a place to donate all her art supplies.

It's the best there is (and I don't just mean the trappings).  She's likely going to hate it, but we'll see.  They are putting us at the top of their list, they will go to the geripsych unit next week to do an assessment.  Today the nurse at the geripsych unit tells me she's had a "great day."  She tells me she's absolutely miserable, it's horrible, they are letting her go tomorrow.  No word from the social worker or the docs.  It's like she's just in storage, being warehoused.

Meanwhile I bought lightbulbs and pansies at the hardware store.  Washing the filters on the oven hood.  Made an appointment for my first non-covid haircut in two years.  Step at a time.  Topical anesthetics on the heart.

Pat6177

Thanks for the update M1. I’m glad the tour went well and that you are able to line up that care. Hopefully, you’ll hear from someone soon with info on her medical care. Hopefully, they are adjusting her meds. I’ve always felt that waiting is an awful place to be. So I’m sure waiting to hear from someone about her progress is more pain on top of everything else. Hang in there!

Joydean

M, I’m so sorry this is so hard for you and your wife. 

I do hope she will like the MC, especially the cat. Can they pet the cat? You may have to let her have some treats for cat, not food! Just kidding there. 

Prayers for you and her. 

Jo C.

Despite the circumstances, the description of the care setting sounds top drawer.  So hope all works out well and also hope you like your new haircut - first one iin two years; must feel good having that done professionally.

You may well have already thought of the following, but just in case; some experiential ideas:  Having been through such transitions, I would like to suggest that you have all of your LOs belongings brought to her room and put into place prior to her transfer there.   Perhaps some items of familiar comfort would also be helpful.  I found doing that worked well for my LO.  All clothing, shoes and grooming items put away in closet and drawers.  Familiar comforter for the bed and afghan that was loved were set into place.  Also provided her favorite sleeping bed pillow for her comfort.  Pictures for wall and a few photos of family as well as a good photo of herself in better days; that was good for her and also good for staff to see.   Getting all set into place meant that there was no fuss and bother when she was admitted as fuss tended to unsettle her.   

The room was of sufficient size, so I was able to bring a favorite upholstered recliner chair.  My LO was transferred directly from the hospital to the care setting - I used the fib that the doctor wanted her there for further care as she was not yet completely well and then refocused the topic very quickly.  The staff was wonderful; they immediately came and engaged her.  They assigned one particular aide to be her primary helper on each shift; for the first two weeks this same primary person would guide my LO; bring her to activities, assist with needs, etc.  This kept confusion down and got her familiar and beginning to bond to someone which did much to lessen stress.  I also ensured that she would be sat at a dining table with others who functioned at her level so she would find mealtimes more comfortable and perhaps begin to connect with other residents as casual friends.

The facility had a questionnaire to fill out regarding my LOs likes/dislikes.  It was a start but not very detailed.  I found it helpful to provide a copy of my LOs routine, what was upsetting to her, what comforted her, topics of her interests, and more.  It was appreciated by staff.

Talk about being unsettled on the day of admission - I felt so on edge; internal shaking about a 9.5 on the Richter scale.   More internal clicks than a piano metronome while having to maintain the look of ease and comfort.  Academy award time. It went better than I had thought it  would.    Cried all the way home and I am not a crier. Couldn't sleep that night - called at 2:00 am to check and see how she had been doing and all was going well.  Huge relief.

Not only will your LO have a period of adaptation, you will too; it takes a bit of time. I found that visiting in the public activity area at a private table was far better than visiting in my LOs room.  She often tended to act out in her room but did not do so in the more public setting.  I finally got to the point that I did not cry after each visit as I drove home in the car.

Once again I send you best wishes and warmest thoughts your way. 

J.

White Crane

M1, the facility sounds wonderful!  What a blessing to have such a nice place for your LO.  I know this is hard but you are doing such a good job taking care of both yourself and her.  The pansies and the haircut both sound great!  I'm glad you are finding some peace.  Sending hugs and prayers.

Brenda

M1

Thank you guys, again....the loneliness this morning is crushing.  Worked my tail off outside yesterday and plan to do so again today.

Being in the holding pattern is very hard.  She is calling me at least twice daily--she's befriended the nurses, of course, who are letting her call whenever she wants--telling me it's time to come get her and that it's a horrible place.  I think that's likely to continue.

Yes, I am already thinking about what to take.   This is assuming I can get a bed, God knows what I will do if I can't.  The "Plan B" place recommended to me is nowhere near what I want for her.  

I will get copies of pictures made as soon as I can.  Bedcovers, etc. will have to be new (she has a king-size bed here and there it's a twin.  Quite a change).   Chairs I'm not sure about yet, there's not a lot of furniture from here that would transfer easily.   She can have a TV, she can have a telephone in her room, I don't know about cell phone (I think not).  They are not going to have many 81 year old women whose daily attire is Carharts and tank tops without a bra.  And work boots.  I laughed when the intake form asked about lipstick and manicures.

My only concern about taking a lot of her things is that she's going to question why they are there when we are selling this as a temporary stay.  But maybe she won't.  What seems logical and obvious to us may not be for her, I know.

PlentyQuiet

If she questions why her personal things are there you answer:

"Because we are able to have them here and your comfort is always my top concern. I love you and I always will"

Ed1937

M1, the place you toured sounds like a really good place. I hope you can get her in there. 

"They are not going to have many 81 year old women whose daily attire is Carharts and tank tops without a bra.  And work boots. " Thanks for the laugh. It won't be long before we have 81 year old women coming in with their bodies covered with tattoos.

It sounds like you use hard work to relieve stress. I do too. I hope everything goes well for you today.

harshedbuzz

M1 wrote:

Thank you guys, again....the loneliness this morning is crushing.  Worked my tail off outside yesterday and plan to do so again today.

It's an adjustment for you too. Be gentle with yourself. 

Being in the holding pattern is very hard.  

For my mom and I, the days leading up to and day of dad's transfer from home to the MCF were the worst part of our journeys. I was so on edge and sadness was crushing. 

My only concern about taking a lot of her things is that she's going to question why they are there when we are selling this as a temporary stay.  But maybe she won't.  What seems logical and obvious to us may not be for her, I know.

We did the opposite of what JoC. suggests in terms of setting up the room. I think if dad saw his "stuff" he'd have flipped out. It was easier to "Bring stuff from home to make you more comfortable" later as a kind of "treat".

Our fiblet was that dad's new doctor had ordered a stay in a rehab for PT to get stronger and that we found a fancy rehab with private rooms. He'd been in rehab out of the hospital about 14 months before and it kind of stuck with him. The place was being remodeled and while care was great, the space available outside the patient rooms was very limited and he was offended it wasn't fancier. As a result, I decorated his room in a kind of Holiday Inn motif- nice but sort of impersonal. They hung some large photographs from his favorite golf course on the walls. (dad sometimes processed portraits as people which upset him- so we limited pictures of family until later) We stocked his room with minimal clothing and toiletries and brought more later along with a framed picture of my mom which some other resident swiped on the regular. He walked off with dad's slippers often as well. Label everything. 

Dad's MCF had shadow boxes at each door which families fill with pictures as a way of reminding staff of the person's history. They also had us fill out a 14 page questionnaire about likes, dislikes and routines.

We did limit visits to the public areas for the first couple of weeks. I took my mom the first couple weeks, too, as I was more adept at redirecting him and removing her when things got ugly. If you have someone who could come with you, it might be a good idea. If nothing else, it saves you the drive home alone which can be really hard. 

You mention a TV and phone. We passed on both. Dad was beyond using a phone when he went into MC and the TV was a bit of a problem. We'd had parental controls to keep him from watching content that agitated him and wouldn't be able to do that in MC. He sometimes fiddled with settings and wires which would have been a burden for staff or myself. Plus, the MCF operated under a house model in which residents used their rooms for sleep and rest but were meant to be out socializing the rest of the time- they had a living room area in each quad with TV set to different "lite fare"- sports, game shows, cooking, TCM.

Thinking of you.

HB

jfkoc

Had to google Carhartts. Had to laugh at the tank top sans bra. Sans bra will not matter and is pretty normal here. Sometimes I put a top over the tank and I will surrender to a bra if going out. You might take some Tee shirts for variety.

Boots?  Why not but you might include some slippers...perhaps LL Bean's. 

The quiet....who knew the world could be so quiet...Who knew the world could become so lonely.  Some days I spend with Frank, Tony or maybe some Beetoven. Occasionally some Aretha which always gets me moving.

It is wonderful that a place has been found. I hope that bed opens up soon and that both of you will start to aclimitize (sp).

Jo C.

Sans bra won't be a problem; many of the women in such settings prefer to go sans bra.  In fact, had to get my LO some soft camisole type underings from the Buck and Buck Catalog (they have many types) for some modesty coverage under her thinner shirts/blouses.

Had to grin; your partner will be the hit of the place with her preferred dressing habits. Carharts? Workboots? (Insert loving smile here.)  The other residents will probably think she is someone who can fix things and bring her their items to be repaired.   She should be comfortable and if that is her familiar dress; well, why not.  Some settings are particularly sensitive to what a resident's prior work was and can often develop little appropriate work things for them to do in the garden or in the building itself; so she may find things to do.  She can probably outdo any of the men there for the expertise she has had in her working life. 

Whether or not to put items into place before her arrival, you can just say that you wanted her to be comfortable.  My LO was alert, and oriented; she was aware.  If we had tried to bustle around putting clothes and grooming items into place in her presence, she would have been quite irritable and unsettled; that was her way.  You will be getting a new bedspread, so it will not be one from home - for all she knows that spread came from the facility.  Some residents actually had larger beds brought in once their LO had adapted and they knew their LO would stay; (the rooms were good sized.)  Usually just double beds though, not king.  Chair may not be necessary; may even be a comfy chair in each room.  That can wait and may not be needed.  I just had my LOs brought because it was such a favorite. For some reason, she did not think it was the chair from home and I never said different. 

Wonder:  Hate to say this again, but if you use your title of, "Doctor," do you think it would be easier to obtain a bed in the preferred facility - especially if you have met the Administrator and DON?  Honestly, as sad as it is to say; that can hold some sway.  I actually used my professional title as a help when getting my LO into the preferred facility.  NOTE:  Always, always call very first thing in the morning and ask about a bed opening and even pay for it for a few days in advance of your LOs arrival if you have to.   The hospital Case Managers start calling for beds as soon as they get their day started; the goal is to get to the facility before they do to snag a bed if someone is suddenly leaving or suddenly has "left" during the night.  Also good to make best friends with the intake people.  Oh; the things we do to be able to get our LOs situated as best we can.

I am concerned on your behalf and so hope you are able to get some sleep as well as not forgetting to eat so you stay well.   Am keeping hopeful that a bed will soon open.

Do not worry if you begin to think about pulling her out of the new facility within a week or so; that is quite common, just give it more time.  It takes four or five weeks or so for everyone to begin to get acclimated to the new way of being. 

My LO would complain to me on the phone.  However, she was entertained by all the available activities and began to join in.  I was able to see her through a one way glass from one of the offices.  She would be sitting in on activities, smiling and doing well. That was very helpful for me to see.   Your partner may find she enjoys the increased socialization and things to do.  Here's hoping for the very best for the both of you . . .

Big hug once again with wishes for peace,

J.

Iris L.

jfkoc wrote:

Boots?  

UGGs?

I think a lot of ladies went commando during the shutdowns 

Iris

Joydean

I love the fact she worked in carharts, they are so very comfortable. I have several to work in! Work boots, nothing better when do so much outside , here especially since we have copperhead’s. 

I do hope and pray that bed comes in soon.  Hard work is so good for stress release. I can say that because I do all the hard work outside here. 

Hope that hair cut was all you hoped it would be! 

Joydean

I love that she worked in carharts. They are my favorite things and definitely work boots. I do all the heavy work outside and boots are great because we have copperheads. I have learned how to fix something’s on the tractor. Loved doing it.

I do hope that bed comes up soon for you and for your loving wife.  Prayers for both of you. 

Hope that hair cut was all you hoped it would be.