Geripsych update

toolbeltexpert

I just wanted to give an update on how its going with my dw day 2. 

I called to she how she is doing and the cna told me she didn't eat lunch and she slowed down on asking about her pocketbook.

 I asked if she had her hearing aides and they said she did, whew, they are not broken. The cna also noted that dw was talking to someone and she thought it was me. 

Today would have been the first day I could have visited, but I can't I am just so drained emotionally, the visitations are three days a week tuesday, thursday and sunday, from 2 to 230. I don't know if I can do it this week?

 I didn't sleep well last night, leg cramps got me. I did sleep a little later to 5 am, and I keep busy, push mowed till I dropped, then I weedeated, then I did the zero turn and the the tractor and bush hog all told about 6 hrs, It felt good to not worry and get something done.Last time I mowed 2 weeks ago dw tried to get away in the car. 

They allowed dw to call again today so I asked before they gave her the phone if she had her hearing aides in, yep, she still couldn't hear me, but she was able to ask them if the volume was up on the phone!!!!!! so they turned it up for her, all she keep asking was when was I gonna come home, it was like she was home and I wasn't I said I didn't know when I would be home,dw asked, are you just gonna dump me, broke my heart and I change my story, tomorrow tomorrow, I gotta remember that.  She said she was worried about me all day and was glad that I was ok. Broke my heart twice as much. she sounded like she was sedated?

 My first care meeting is Thursday by phone, If anyone has any ideas on what I might ask I would be grateful. I have poor cell reception here so I hope I get to hear what they have to say. I went thru dw pocketbook and got out the pocket knifes and low and behold she had about 700$ so I took about 500 out and scattered 20s and 1s and 1. 100 so when she does get it back she won't be asking where her money is. I had keep giving her a little money when she said she didn't have any. 

 Thank you all, you are all in my prayer. Each step of this journey gives me an appreciation for what some of you all have gone thru.

 M1 I went back and read that long thread when you went thru this process and so much of what you had written rings true with me, just haven't made up my mind on placement, but if it happens I hope it's a direct transfer. My choice currently doesn't have a bed but I am the top of the list. I am praying for the guidance I need for the next steps. 

Oh and her hearing aides are just off warranty, her first pair were retired after 7 or 8 years, the ones she has now are just over 2 years old. I will look them over when I do visit to see if there is any damage. 

Her audiologist is a great guy, we travel 70 miles to get them checked up and get replacement items which are cover for the life of the unit. 

The replacement warranty is only 2 years though. If they need to be replaced I would still do it, there are lots of hearing aid producers since they relaxed the regs on hearing aides.

 I hope that my saying this doesn't offend anyone who is an audiologist I do believe in proper hearing care,I do have her prescription on my phone. If anyone is currently looking for hearing aides, the famous auction site, I am not trying promote any one, but there are tons of high quality hearing aides for a lot less and some can pre program if you have the scrip. Her hearing is so important and without them you would have to almost yell if shes across a room.

Well leg cramps are back as well as the scares!

M1

I feel for you Stewart, I remember those days all too well.  I also got on the tractor this afternoon in 95 degree heat just so I didn't have to think.

My experience with the hospital was so awful, hard to know what to say.  Except to be sure and ask if she's getting her regular medications, and to be clear about how they plan to treat her.  Hope you have a better experience than we did (but that would be easy).

Ed1937

I'm glad her hearing aids are not broken. You don't need to deal with that too. 

It seems like there has been more pain on this forum in the last 6 months or so than there has been during my time here. You, M1, DJ and others. 

Don't force yourself to visit until you have recharged yourself. Take care of yourself first. 

You are all in my prayers. 

toolbeltexpert

M1 I think bush hogging is therapeutic. I have let my farm kinda grow up, I keep paths for our 4 wheeler, and they always need maintenance. 

I also have a kubota tractor with a back hoe on it. Digging holes is somewhat therapeutic as well. I bought it to repair our septic system thats a s#@$ job. 

I was talking to a family member about some of dw's behaviors, I told them we have hummingbird feeders and the only problem is when she is making it she can't remember if she put in enough sugar, so she dumps it and tries again, I told the family member that I didn't know if it would effect the septic system but that we must have the sweetest smelling S%$# around.

Joydean

TBE, I was thinking about what you said about hummingbird’s and all that sugar. Sorry but I had to smile. I only have a little over 40 feeders out. Before we moved to the country I didn’t know anything about septic tank. Our septic guy told me to add a cup of sugar down one of commodes ones a month, so that’s something I have done for the 9 years we have been here. I love to watch all the hummingbird’s early in the mornings when they are just coming in the eat. 

I do have you will get some rest and a good nights sleep. Easy said but oh so hard to do. Don’t forget to eat!  

jmlarue

My go-to treatment for leg cramps: Gatorade or Pedialyte to replace electrolytes and potassium tablets. Also a reminder to self that I need to re-hydrate often when doing yard work. Those cramps a awful. Take care of yourself. Visit DW when you are emotionally stronger.

Jo C.

Oh; this is going to be long as ideas and thoughts are flitting about - sorry.

Stewart, you have been through the wringer and back again, all of it with severe issues and mega stress not to mention heartache and financial surprises.   I am so sorry.  I don't drink but a glass of wine once or twice in a year, but I feel like I want to buy you a beer or . . . maybe three. 

Thank you for updating us; I looked for you off and on today.   Please try not to do too much.  Leg cramps, are they usual?  If not, your electrolytes may be off or there may be a vascular issue.   You really need some time to de-stress a bit and catch up on the quiet.  Need to stay out of the heat and physical stress until checked out by your doctor which needs to be soonest.  Being that the cramps came and it is not bedtime, you may well have physically overpushed yourself today.  Not good.

No reason to visit GeroPsych this week, that is not uncommon in such situations. In my LOs GeriPsych stay, no one was allowed to visit the first week, that was their rule.  Strict visiting guidelines.

You can request not to receive phone calls until you see your wife next week, just an option if you so wish since the calls cause upset for both of you. That is preventable.  Your cell phone may be "broken." Fiblet.  It is hard to remember the following; but do try to remember - you are not doing anything to her; you are doing something much needed for her.  There was no possible way to obtain her the help she desperately needed and needs at home. It was all caving in and was a disaster waiting to happen.

Best to take the bull by the horns which you have started doing; not easy for a man who has spent a life being kind to all and sundry and not making waves, and now you have to take the unexpected strongest stance in your own home out of necessity.  So hard to do and it can feel just awful, but you are getting the right care for the right reasons.  Continue on in strength and give yourself permission.

It is not a bad idea to have a LO transferred by ambulance directly from the hospital to a chosen care facility.  It is far, far less traumatic for both the LO and for the family member.  With my LO's transfer to a care facility, I simply stated the doctor said rehab was needed.   Oh; those fibs; not easy, but they certainly are a kindness to our sadly compromised LOs.

NOTE:  She cannot have any money either in the GeroPsych Unit nor can she have any in a care facility.  If you bring her the handbag and she does not mention it, do not bring the money up.  If she notices, tell her that the hospital will not permit any cash and you have it safe; that is true.   You could tuck a small treat of a candy or cookie she likes into the bottom of her handbag.  A nice surprise to deflect her from the money issue if necessary.  If she melts down, that is time to take a lesson from M1 and leave rather than hanging on and perpetuating the behavior.

Dear Stewart, I am a bit concerned about those leg cramps and most of all, your stress levels.  I do understand how busy and how exhausted and overloaded you are, BUT could you please make a visit to your doctor on an urgent basis asap and have labs drawn and BP checked?  Time for that to be done.  Best to keep you well for both yourself and for being your wife's advocate.  Please do that without delay.

The Depakote was restarted to see how your wife did on it and I would imagine also possibly to check and see if some of her behavior was related to the abrupt removal of the drug without tapering. 

You will want at that meeting after her condition has been discussed, to ask for a recommendation to a dementia specialist your wife can see after her discharge when she is no longer in GeroPsych AND ask (be sure to do this) if that person can be ordered in as a Consult while your wife is still in GeroPsych in order to get her established.

Reason is; if she is seen by the specialist while in the hospital there, she will be established in the doctor's practice - that would be her first visit.  If you wait to have her see the  specialist only after discharge in the future, it could take a very long time to obtain an appt.  I am just winging it and throwing things out there, here are some thoughts; I may do better later:

1.  You can ask about her diagnosis for type of dementia being confirmed and what meds will she likely be discharged on.  Ask about the Depakote as her behaviors had only ramped up when that med was started and then got worse when discontinued without tapering.

2.  You can ask what the projection is for her progression of the dementia in an estimated time frame and IF they feel that behaviors are likely to ramp up again and be an ongiong problem issue considering her history.  (Just interesting to get their take on it.)

3.   Side effects from meds if they have seen any.  And how has she been sleeping and are they giving her a med to induce her sleep?

4,  And IF they feel there would be a likelihood that she will be more a behavioral issue at home where there are so many things that trigger her.  That is important.  If your visits trigger her, then I would imagine that may translate to the home and triggers there too, but hard to tell.  NOTE:  You need to take a strong stance about your inability to care for such problem issues at home. 

(You know her disease will worsen as time moves forward, is it best to place now so she can acclimate and benefit from services in the care setting rather than wait until things are far worse?  I rather think you cannot do all of this alone at home 24/7; it is over the top and it seems it may not be sustainable. That is a big issue - sustainability.  As it is, will her care in a good  facilty be likely to give her a better quality of life? Open question that has no answers until MC is in place.)

5.  What do they specifically feel are her capabilities and deficiency losses.   This is important.  It may be that she would do better in a care facility with socialization, activities, structure and routine and plenty of staff to meet her care needs on a 24 hour continuum and good meals structured at certain times each day.  It can make a difference and some of our LOs do better.  No at-home triggers either.

6.  Who should follow her as an outpatient and how soon should she be seen in follow up.

7.   Will they extend her stay until they know she is stable as no facility will accept her if she is acting out in highly negative behaviors.

8.  Will they send her out with medication at time of discharge transfer OR will you have to get prescriptions filled.  Then find out what the care facility wants re prescriptions if she is to go there.  Most times, the care facility will not permit outside prescriptions to come with the patient, they want them ordered through their contract pharmacy.  Need to know this in advance.  AND since it takes time to get the drugs from their pharmacy, I would push them accepting the meds from the hospital to have on hand until the new prescriptions arrive.  You will want no gaps in her meds which has happened for some people.

9.  Do they have in person support groups for family members of a person with dementia.

There is more, but I am not getting it. Others will come with more thoughts.

So . . .please make appt. with your doctor and get labs and then one foot in front of the other and no need to make visits or calls until next week.  This is alien and against all of your personality and profession for most of your life.  Not only will your wife have an adaptation period, you will also have your own adaptation period and in fact your adapatation period in the new way of how things are, has already begun.  Also, let the doctor know if depression sets in for you and stays.

You can do this; you are on the path and have been doing a marvelous job of it all in such a short period of time with so much to be done and experienced.

Best, best wishes for you to get a good nights sleep without any leg cramps. 

J.

toolbeltexpert

Jo c thanks for your post I had gone back and read my er post where you talked about have a dementia specialist and I wrote that one down. I have copied your post as there is so much I need to Keep.

Yes the leg cramps started monday, but that may be in part to the er visit which was 9 and a half hours during which I didn't drink as much water as I should have. and yesterday was very physical. They didn't get me last night.  For many years I drink a gallon of water or more depending on what is happening ie mowing. 

My sleep however hasn't been what I normally have, I usually am out is 5 minutes it was 2 hrs of tossing last night.

Joyce we used to have 10 or 15 feeders out and would have 50 birds but we have been doing that. I have videos of me standing among the feeders boy thats is something. I have never heard that about sugars for the septic.

Jm I thought we had some dry gatorade nope today that will be on my list.

Lastly and this may not be the post to ask this question, but I know some on the forum who have had their lo come home after the geri eval, and then there are some who placed. 

So here is my question if you brought your lo home did it work out or did it kick the can down the road. I ask because you have that experience. I know no two cases are the same, but my dad always told to learn from others. 

Well gotta go have some breakfast and get going on losing a lot of Big house plants. I love you all thanks everyone for your kind words and big hearts.

Ed1937

Stewart, you could start a new thread entitled "Lady Texan". She would have some input on that, but she might not see your question about it in this thread. I think she visits the site, but not as active as when her husband was here.

Jo C.

Good morning Stewart.  As for success returning home, that will be so different for each person, so it will be interesting to hear what others have experienced.  Not only do we have love and concern for our LOs happiness, there is also a financial component to this if a LO is not receiving Medicaid in a contracted facility.  It can be a two part whammy.

With my LO, after GeroPsych, there was a transfer to a long term care facility.   My LO did very well there after the first few days.  All was peaceful, and except for occasional minor irritabilities, it stayed that way for a month.

So; I decided to take my LO home and I had everything in the house ready in detail so there would be no fuss, no muss.  Took it slow and steady.  For us, it did not work well at all.  Triggers.

Big time triggers everywhere.  My LO used to doing so much and being a personality that was used to being in charge had lost it all - suddenly, even just sitting in a chair looking around had major meltdowns.   Took good measures in a positive manner to no avail. The meltdowns were floridly dramatic and went so on a 24 hour continuum - even at night lashing out and shouting, getting into stuff, etc. No UTI as I had that checked.  It became so bad that it was over the moon.  Several weeks of this without let up.

Sadly, my LO out of necessity was not able to remain at home.  Had to remember, it was not just me who was feeling the brunt of the horrid behaviors, my LO was suffering horribly. 
 Imagine; if they are driving us to distraction - imagine how dreadful and frightening it must be to live inside their head not only believing the delusions and experiencing the triggers that ramp them up to agitation and fury, but actually FEELING it.  Awful.   If we can relieve a LO of that, then it is up to us to do so as they cannot do that for themselves.  Sometimes it is only adjusting or adding a med, sometimes it is not living in the environment causing the dynamics.  Interesting that when back in a care facility, my LO became calm again - no triggers - only triggers were the ones at home.  Truly sad.

Others here will have had a different experience and had success.  Even if there is the ability to return your LO home, it will be necessary for you to have various Plan Bs in place as her condition will continue to worsen as all dementia does.  Are you capable of caring for incontinence, inability to feed and dress, when wheelchair or bed ridden; these eventually do happen. Can you do hands on 24/7?    Can you afford for someone to come in and assist, or to be a hired "best friend," several days a week who can help occupy her . . . that may help. Perhaps someone from church?

Hoping for the very best for both of you.  And also holding out hope that our highly stressed friend, Stewart, does not try to guess reasons why the cramps and feeling so off and instead gets  himself to his physician for a quick checkup and some labs to ensure he is alright and nothing needs attention.  Oxygen mask on first for caregivers, especially if caring for a LO at home.

J.