I don't know if I can do this(1)

toolbeltexpert

I had a care team meeting today. Everything is going according to schedule, they are giving her 1000mg of depakote, 10 mg lexapro. She hasn't needed any melatonin for sleep.

She got 9 hrs sleep yesterday. The blood level of the depakote is 29.

 She sometimes joins in the group and sometimes not.  She is bull headed and when she doesn't want to do something that is it. 

She is an elopement risk and they found out just how fast she is. Dw and another patient are  joining forces trying to find a way out and she knows what the buzzer sound means. Which means no snf. So it's a personal pay if I can get my first choice, please pray for God's will. 

She now needs help eating and they are gonna try finger foods,that is a new thing for her.

They made it sound like another 5 to 7 days,maybe more?

 She is confused, sad,heartbroken. I went in for a very short visit I brought her a diet coke and she didn't want it. She cried all the time. She had two identical note written to me wondering why I am not coming home. She also was able to write her sisters phone number. But that's her landline not her cell. She had that memorized for a long time. I was hoping she was going to be better than this, I may let someone from church visit on Sunday, there are several who have asked. And it's a 30 miles or more for them.

Now for me. The bandage had kinda healed to the wound a little but it got ripped off today. I am back to sq 1 again. I haven't  been sleeping well since she's been gone. I believe I got a stomach virus at the er and that was the cause of my leg cramps lost 5 pounds due to diarrhea, or scares as we say in tn.

I still remember everything that happened and her behaviors,but this is killing me. She said if she died of a heart attack it's because her heart is hurting over all this. It wasn't a guilt trip she is so confused as to why this is happening. I don't know if I can place her. I told the care team yes i want to place her, but I can't bear to think about it. Sorry this isn't a joyful post and I know I haven't had any good news lately. 

JO c I did ask if anyone would be following her after placement they said no, i ask if they would bring someone  in as a consult so I wouldn't have to go thru getting started all over, they said they would.

They thought her dx would be Alzheimers, they did another slums and she scored a 12 down 3 points in less than a month.

Sorry my posts are not easy to follow.  But thanks everyone for all your help. When the care team meeting was over got, they jokingly asked if I wanted a job because I am well informed. I jumped at it,yes, i told them to keep me posted if they had an opening.

ButterflyWings

One day at a time, TBE. I think your posts are very clear and I can feel your heartache as well as your love for your darling wife. This dang disease feels like schizophrenia and out of body experiences all wrapped up in one, to me -- for the caregiver that is. Remember, you have somebody bigger than you and I helping sort all this out, you know, so just try to keep breathing.  

Like the team said, you really are informing yourself and working hard to get the best options for your DW's care. That is huge. She was ramping up with no sign of where things might end up, nor how bad they might get. This is a much needed treatment and assessment period, as well as a time for you to try to at least get a little R&R. To be ill on top of everything you are dealing with...well that is a real drag. So sorry about all of this. I hope it gets better soon. You will make the best decision at the time, when the time comes.  Sending you virtual hugs!

Quilting brings calm

TBE-   This part is hard.  Breathe and just keep reminding yourself about this last weekend.  You don’t want either of you to go through that again.  

I’m confused at to why the elopement risk and knowing what the buzzer means translates to no skilled nursing facility.  Everyone I have ever been in is locked  and a code is needed to open the door to leave.   The code prevents the patients from opening the door by pushing a button. Because elopement risk  has always been a possibility in an snf.  Is a MC more locked down than that? 

I wonder if she is starting to have some delirium this week in addition to the Alzheimer’s.  A 3 point drop in a month is a lot.  Delirium would  explain that and often happens in a change in routine.  On the other hand, her last week or so at hone was pretty brutal on you and the 3 point drop might explain that. 

I’m glad you were able to respond to the joking job offer with a yes.  You never know when an actual opening could happen… or when they could mention your name to someone else.  

I hope you physically feel better soon. Stress and a stomach virus… double whammy. 

Ed1937

Stewart, I'm really sorry for the way things have been going. Making the decision for MC was one of the hardest things I've ever done. Even though it's so emotionally hard to put someone in a facility, we just have to think rationally. There are times when PWD actually kill their caregiver. I hope your stomach virus has just about run it's course, and you can get some much needed deep sleep.

M1

Stewart, did you think to test for covid?  Sometimes it does present with Gi symptoms.  but Norovirus is also around these days and easy to pick up, too.  Just be careful out there.

toolbeltexpert

QBC, The mcf I want to send dw has a snf and a locked mc. I have already talked with them and they told me if she was a flight risk she couldn't go to the snf, which she might have been able to go to and Medicare would have paid part of the cost. oh well

 Where she is now when they let someone in the door makes a buzzing sound, and she heads for the door. They put up a sign on the outside that says elopement risk which warns everyone coming in be on the look out.

I am concerned that the depakote maybe causing the delirium I wonder how would I approach mentioning this the the Md without coming across as a know it all. I just want to be the best advocate for my dw and don't want to do anything that could make her a troubling case where she wouldn't get the same care. She has had some major changes for sure. I know there is a trade off with medication it's just another wound for me.

Stewart

M1

Stewart, do NOT. be afraid to speak up and say what you are thinking.  Very, very important, you should never feel like you can't ask questions.  I got treated that way too while my partner was hospitalized but if I hadn't asked questions, the huge medication errors that happened would never have been discovered, corrected, or reported.  Open communication is critical to preventing everything from medical errors to airplane crashes--it's been. well studied and is a big part of malpractice prevention training these days.

Jo C.

What a difficult day; how I wish it had gone better for you.  Stewart, logic and emotion live on two different planes of existence.  When logic is present we know what is necessary and how to move forward, but emotion comes into play and that too is valuable.  However, emotion cannot singly rule the day as sustainable appropriate outcomes and what is best for the patient and the caregiver is what is necessary despite the deep grief surrounding having to make such an unwanted decision. 

The behaviors being exhibited by your dear wife are very telling.  She was already doing her elopement behaviors at home running to the neighbors houses and also getting into vehicles using various keys and driving off into no one knows where; literally locking herself in a room and not coming out and being resistant and uncooperative with needs.  That need for elopement and the care resistant "bull headedness" you describe are barriers to ease of care or possibly even possibility of home management on the 24 hour continuum by one person.

I realize how touchy finances are and truly understand that concern.  However, your wife is not a SNF patient - that is a nursing home level of care and she is far too high functioning in behavior and mobility to be able to be managed at that level and all staff is not as highly trained in dementia in the SNF setting.  Memory Care, if that is possible, with its locked environment appears to be the most appropriate level of care for her at this stage in time.  And, Stewart, if she improves greatly as time moves on, it may be that she could return to a home setting, but that is not likely at this time. I am deeply sorry for how emotionally painful this is; never could you have foreseen such a situation and it is such a shock as it all unfolds and comes apart. 

NOTE:  I also think, in regard to the diarrhea, (it is of course good to take an at-home COVID test since you were in the ER setting for so long), my guess would be that your gastrointestinal motility is highly affected by the severe stress you are experiencing. That is quite a common occurrence under such severity of stress, anxiety and also perhaps even some depression.  The leg cramps may well be caused by the electrolytes depletion through fluid loss.  Rather than to do only self-treatment, it is a good idea to contact your doctor so as to head off any preventable other issues.   Please stay hydrated sipping water and electrolyte fluids that do not cause increased motility while you are contacting your physician and letting him know what is happening. He may or may not recommend taking Immodium, he may or may not want a stool sample to be sent to lab to rule out anything causing the issue; but he will probably be thinking more along the line of severe stress and anxiety.   He will probably want to know if you are having a temp, how often the diarrhea is occurring;  any rectal bleeding, mucous in the stool, if there are food triggers, dietary and fluid intake, and other questions re how frequent and if it happens only after meals or throughout the day. Your doctor may also want to ask you about anxiety and depression as there are low level meds that can be of assistance.

If it is a hyper-motility issue there are meds to help control that.  So; it is good to let the doctor help you; this is one more thing you do not need to be dealing with.   Most of us when we have such an issue know to stay away from dairy, fat and greasy foods, artificial sweeteners, raw veggies and fruits, especially citrus.  Caffeine and carbonation may also be an issue; your doctor can inform you of what he feels about the diet; always consult and follow your doctors directions.  Many MDs continue to recommend the BRAT diet when having such issues; that is:  Bananas, Rice (white), Applesauce and dry Toast (white bread). Your doctor may or may not recommend that to you.  I am NOT recommending or "prescribing" this for you; your doctor will make such determinations.

As said before, your entire profession; your personality, everything that has been you, was about being kind and supportive and uplifting to others; shockingly, your entire world has been turned upside down and your natural tendencies are facing off against the unexpected, never before experienced harsh realities in your own home; that is so very hard and even alien.  On top of that are the financial implications.  You seem to be finding your way throught the quagmire, and Stewart; really, you are really doing an excellent job of it all especially under the circumstances.  You are already a very good advocate on your wife's behalf.  And it is perfectly okay to ask the question about the Depakote; it is not being disrespectful nor will the doctor and staff feel that is a negative; questions are expected, it happens all the time and they are used to communicating with the family re such concerns and need for information.

NOTE:  It is really a big positive that the staff will order a dementia specialist to consult on the case to get your wife established with that specialist for outpatient continuing management.  BUT:  Do not let it go without following up and ensuring this has been done.  Staff sometimes forget to follow through, so it is always good to confirm.

I think you know what the best move forward is despite how horribly difficult it feels.  Please take care of yourself now; you need to stay healthy and find some ease.  Let us know how you are, you know we care very much.

J.

Pam BH

TBE, I'm so sorry to hear everything you and your wife are going through.  Don't beat yourself up.  You've got a lot on your plate, but you CAN do this. God gave you the strength for this very thing.  Praying for both of you

Marie58

TBE, I haven't been here for a while so am just catching up on your situation. I'm so sorry all this is happening and that some hard decisions are looming. You and DW are in my prayers. Take care of yourself and may the dear Lord bless you both. I pray He gives you peace so you can get some rest.

Buggsroo

Stewart, I am so sorry that you are going through all of this, dementia is horrid, there is no getting away from that. Try to remember that it is the disease speaking, not your wife. I think you have been very king and loving concerning your wife. Don’t be afraid to ask questions, it is how we caregivers are able to give our loved ones our best care.

Crushed

. I have already talked with them and they told me if she was a flight risk she couldn't go to the snf, which she might have been able to go to and Medicare would have paid part of the cost. oh well

please please please do  not listen to the liars running the facility  

They cannot participate in medicare on medicaid unless they can deal with elopement risk
  They are cherry picking

Im in England right now so I don't have may material but talk to any elder care lawyer

But do not listen to the liars running the facility

Joe C.

TBE, Depending on the particular facility, a Locked MC could be a better option for your wife than an SNF. The staff in the MC will likely have more experience dealing with PWD than the SNF facility staff which have to focus on a broader array of medical issues. Also the MC with be better structured to keep the PWD engage. I realize there are financial challenges with MCs that challenge us all so my comments are only on the Care differences in the two options.

toolbeltexpert

Well sleep is getting worse, just keep seeing my dw tears. 

The social worker asked at the care meeting if I could get the police report. On my way home Thursday I stopped at the police station and of course I needed to speak with someone else who wasn't there, they made the called which lead to another call.

 Come to find out if the situation is resolved there is no report. 911 transcripts are 50$ a piece. Little did I know.

I called and told the sw which is the weekend sw she made a note of that. I told them I would ask the neighbors if they could write out what happened.

 I am cleaning out the house, my dw bathroom which is a upstairs master bath. took a whole day. Nothing had ever been moved or dusted, good by spiders! The bath has two doors one of which hadn't been opened in 25 years because the "Master Bedroom" became dw craft room. there were bins piled higher than my head, boxes of craft paper ect, I was determined to get that door open which I did. Now her bathroom is clean and access to the bathtub clear, it wasn't before. I am doing this, one to keep busy,two on the remote chance she came home it would be trigger free of the things that never got done, three if I need to sell it will be ready. 

Plants anybody want plants? we have 5 or 6 exotic house plants that are 4 foot tall and some 3 foot around they are on the front porch come get them. Not to mention the peace lilies and a plant I can't spell but it is but it is long and grows like kudzu, there is about 20 on the porch come and get em. 

Gonna take the excess beauty supply's to the food ministry at church and let anyone who wants take it.

I tried to search for mcf on this site, I narrowed it to mcf and the search keep bringing up all kinds of places that do not have mcf. I know cause I have been there.

Tomorrow Someone from church is gonna visit dw, because I can't do it. The sw said if it went bad she would intervene.

 Lastly This stupid chrome book supposedly has spell check, it underlines the misspelled word in red, but how do you correct it. I have tried a tap with 2 fingers, right click argh. My phone has a great spell check and it's easy but this thing is driving me crazy. I was a mechanic for 35 years so typing is a skill I never got. Sorry this is a rambling post. I have been up most of the morning. 

Jo C.

Try calling the Social Worker at the GeroPsych Unit and ask her/him to  provide you with a list of Memory Care Units in your area.  It may however, require being a bit further out than you would like, but that would still get her to adequate care.

Also, you might try calling the Alz Assn. 24 Hour Helpline at (800) 272-3900 and ask to be transferred to a Care Consultant.  There is no fee for this; Consultants are highly educated Social Workers who specialize in dementia. Sometimes Consultants will have listings of MCs and other services for various areas by zip code, city, etc. NOTE:  They also offer emotional support and are there for us to be able to let out our feelings and can often assist us with our planning.

Also, if you have found or can find listings for Dementia Support Groups in your area of reasonable distance, give a call to their contact number if one is provided and ask that person if they have knowledge of MC Units in the area.  Often, at support group meetings, members share such information for specific needs which can be very helpful.

Good to get thing cleaned out. Letting people at church know you have all those plants available, perhaps someone would want them. Or perhaps if there is a patio or other area of the church that needs some greening, perhaps your plants would be helpful there. It is also okay to simply get rid of things.   Later, there will be hobbyists who would appreciate having the hobby supplies in the house if it appears that your wife will no longer be able to continue on with such endeavors which it may well already be the situation.

Keeping busy setting your environment in order, that is a positive.  Now; if you do closets, I have a couple that could use your expertise . . . .

J.