Update, and a busy date

Ed1937

Yesterday was a full day for me, and today seems to be the same. Much to do.

When my wife was in ER yesterday, she couldn't tell the doctor my name, but she knew I was her husband. She told everyone that I was running around on her. She was very agitated at me all day, and tried to get out of the bed to leave the hospital several times. Finally they had to restrain her. About 20 or so minutes later, she was free of the strap, and I had to call for help. Again, they restrained her, and one of the nurses stayed with her for maybe 10 minutes, just to listen to her. She talked to my wife, and calmed her down quite a bit. A few minutes later they came to take her to her room, after admitting her.

I went to her room with her, but she was still agitated with me. When we got to her room. she told the nurses and aides, who were doing what they had to do, that I had a girlfriend. I didn't stay too long because she was so agitated with me. And I had been there all day. But I talked to the nurse, a couple of hours later. She kept trying to get out of bed, and was still agitated, so they finally gave her a happy pill, and she calmed down. I'm not sure if I will go up to see her today. I will call the nurse to have her ask my wife if she wants me to come to see her. No sense making things worse than they have to be.

I forgot to mention that she tested positive for covid, and I was really surprised because she is fully vaccinated, has had two boosters, and the only time she left the house in the last three months or so was when she broke her wrist after a fall. I will be tested today to be safe. If positive, I'll hibernate for a while. At least one of the docs thought it might be a false positive for her, and they will do a different test today. Hopefully it comes back clean.

Gotta run. Have a hundred things to do today. Can't forget to call the MC to see if we can get in.

Kenzie56

Thinking of you today, Ed.  I know this is extremely stressful for you and know that you have the support from your message board friends.

Quilting brings calm

I’m actually surprised they let you stay once the test result came back.  I assume that was because they went with the theory you had already been exposed. You’ve got a few days before she will go to MC due to the positive test result( in my unprofessional opinion).  

I hope they also tested her for a UTI. Hopefully she will be calmer today now that she’s been in the hospital overnight and it becomes more familiar to her.  ( the living in the  moment reality sone dementia patients have).  

How is her wrist?  Did she injure it further thrashing around? 

I’m sorry that your decision to keep her home didn’t work out.  It just shows how quickly lives can change. 

M1

Glad you're getting tested Ed, absolutely necessary.  Glad you're both fully boosted and vaccinated--but asymptomatic infections still possible, and hard to know if it's contributing to her illness.  Probably they will do the full PCR test today.

Keep us posted when you can, we are all with you in spirit.  Hopefully she's in a safe place for the moment.

abc123

Dear Ed, please remember to take care of yourself while you are going through this madness. And remember you have all of us here. I hope that today is a more peaceful day for Mrs Ed and she will be happy to see you. I know you realize you maybe a trigger to her. Ed you are such a fine husband and caregiver. I hate this disease.

jfkoc

with you.....

Jeff86

Ed,  

I continue to admire your adaptability as your DW’s situation, regrettably, changes.  As Plan A is no longer viable, you’ve rightly shifted gears to work on eventual release to MCF.  

Hoping your DW’s agitation recedes and she is able to transition smoothly to MCF when the timing is right.   

We all have your back, virtually. 

Jo C.

Oh Ed . . . we certainly are with you in spirit.  It may be that the positive COVID infection may be a false read as the rapid tests do have more of a risk for false readings.  They will in all probability have done or will be doing a PCR test either yesterday or today which will be accurate.   It wouldn't hurt to ask and ensure that it has been or will be done.

The TIA, (small stroke), and/or a UTI may well have led to the change in behavior.  I am so sorry for her severe agitation; horrible and hellish for her as well as for you.  Will her dementia specialist be asked to come in on a consult so meds can be adjusted to meet any change in present needs? That may be helpful and also eliminate any concern about how to get her to the specialist's office once she is stable for discharge.

Staying away today until medication has helped her may be a good idea since you seemed to be a delusional trigger yesterday.  You will know best.  I cannot say how sorry I am; such a good man who has valiantly done so much in caregiving.

Good idea to ensure that a bed will be available in your preferred Memory Care Unit for your wife when she is stable to transfer.  Hope that will be so, may want to ensure that with a deposit check. 

So hope your dear daughter is able to be present in support for you.  Let us know how you are, we will have you and your wife in our minds and hearts as well as in our prayers.

J.

JoseyWales

Dear Ed, I just want to let you know that I'm thinking of you and your dear wife. Thank you for sharing with us, and I hope that knowing about all of us thinking of you helps make it easier for you to make all these decisions. 

Ed1937

Thank you for all the support. It means so much. We have an adult son living with us, and we both went to be tested this morning. Negative for both of us. 

I also went to the MC today, and spoke with them about what is going on. They know about the positive covid test, and they are sending someone to the hospital to get information from the tests, and do another evaluation. There is no bed currently available, but one is expected to be open in less than a week. It might be possible to go straight from the hospital to MC. We'll have to wait and see.

I talked to her nurse, and she thought it would be best if I did not visit today because she is still pretty upset, and I told her I didn't want to make the situation worse than it has to be. 

Just now got a call from the hospital. She's been asking for me, and she's calm. So I'm headed to the hospital. Thanks again!!

Joe C.

Ed, I hope the Dr. is right about the false positive and that you test negative as well. Hang in there my friend.

M1

Fingers crossed for you Ed--and all your family.

jfkoc

mine are crossed too...........

Joydean

So glad your wife is asking for you! Hope it is all good!

mrl

Prayers Ed,

Michele

Ed1937

Our son who lives with us, and I got tested this morning. Both negative. They told us that if the test comes back negative, it is right 97% of the time. If it comes back positive, the rate drops to 92%. This is the rapid test.

The visit could have been better. She begged me to get her out of there, then begged some more, and some more. She cried until I don't think there were any tears left. But she wasn't as angry as last night.

Pat6177

Ed, I’m glad you and your son tested negative. That’s a relief. And I’m so sorry for your wife’s tears etc when you visited. So painful for you both. You’re both in my prayers.

M1

Ed I can only say brace yourself, and I know you are. You have thought our spouses were similar in temperament and I can only hope you have a smoother transition than we have had.  We tried the rehab ruse but with minimal success. So hard when all you want to do is help but you can't give them what they want. My heart is with you.

Jo C.

You've really got a lot accomplished in such a short amount of time.  It is good to hear that you and your son tested negative for COVID.

So sad and sorry for your wife's tears; she asked for you - what a difference from just yesterday.  If there were any possible way to make all of this better and have it be different, I know that you would have found a way to do it. 

It is great that you have a good relationship with the MC folks and that they affirm there will be a bed availability in less than a week.  What a blessing that the timing works out.

Thank you very much for letting us know how you and your wife are doing, we will continue to follow and as said, to be with you and her in spirit.

J.

billS

So sorry your having this rough patch Ed, hang in there and best of luck.

ButterflyWings

Ed-  No sufficient words to offer, but I’m in the circle of those surrounding you with virtual support and sending strength.

There are just no happy endings with this dratted disease....only less bad. Hoping for the best options possible from today forward, for both of you.

I recall your daughter’s work to help move the placement process forward recently, signaling great family support for your decision. That is a blessing. 

Ed1937

Our son and I went to see her today. She wanted me to get her out of there, and when I told her I couldn't do that, she said "You might as well go then". Several times she told us to leave, so we were only there for about 5 minutes, then left.

But I got some good news. The most accurate covid test came back negative. That's huge. Now maybe we can move forward when the time comes for a bed to be ready at MC. Hopefully it comes open before she is released.

They did an echocardiogram, and it was abnormal, so a cardiologist will be in to see her. She has had AFIB problems in the past.

M1

Mixed news but that's great about the covid test. Afib could certainly have caused the TIA Ed, but blood thinner s will also be dicey with her history of falls. So sorry it's so difficult from all standpoints. Just remember you're completely within your rights to tell them you can't care for her at home any more, makes sense for them to keep her until there's a bed available Ed.  And I'm so sorry she's frustrated with you, I certainly know how that feels...

Joydean

Ed I’m so sorry. But glad the Covid test results were negative, that’s a big win. Glad your son was there with you. Prayers for you and your dear wife and family! 

Ed1937

I guess I didn't mention that the MRI did not show evidence of a new TIA. Could slurred speech be part of progression? It only lasted for a short while, but I've seen that before.

Not sure if a social worker will be in this morning, but I'm leaving soon, and hope to find one.

Jo C.

Ed, MRIs do not always show that a TIA has occurred, so I would still keep that TIA diagnosis as a probability.  (Despite increased helpfulness of an MRI in diagnostics, some stats indicate that about 30% of TIAs are actually caught on an MRI.)

I wonder; could some of your wife's falls actually have been secondary to other TIAs?  Both my MIL and my own mother did have multiple falls that were caused by very small TIAs.  Afib is a bugaboo for stroke risk, it will be risk versus benefit decision by the physician regarding the anticoagulant prescribing.

Also, do keep an eye out for slurring or changes in speech, declined alertness, changes in use of extremities even if not complete loss of use including weakeness and change in coordination,  changes in vision, or other abrupt changes; the AHA data indicates that there is an increased risk for a full stroke within 90 days of a TIA. 

So delighted for you that the PCR test for COVID came back negative, that surely is a huge positive.  Your friends here are keeping great hopes that a bed opens up to coordinate with discharge.  Will the MC facility accept a refundable deposit check to hold a bed dedicated only to your wife?  Be very, very on top of this; like every day. Reasons for this:

Personally, I always contacted the MCs and NHs for my LOs first thing in the morning, every morning, at the time the facility staff would arrive at their office to check for a open bed even if I had been promised one. I made "friends" with the admissions staff.  Reason for this is, acute hospital discharge planning staff call early in the morning to get any open bed for patients they wished to discharge and care facilities staffs develop relationships with the acute hospital staff and they often got the beds; sometimes even if semi-promised to someone else. So; the early bird gets the worm so to speak. 

Being Administrator of departments in acute med centers that oversaw the Discharge Planning/Case Management, Social Services staff amongst others, I did have our staff call for beds first thing in the day because there were often discharges, unexpected discharges or transfers and even deaths in the long term care facilities and we wanted to get first chance; this was often successful.

Gosh Ed, so much has consistently been heaped upon you; and being the fellow you are, you are doing a wonderful job of keeping in front of things.  You know we all care very much and so hope that in all of this that you are able to get some self care and are sleeping okay at night. Best, best wishes,

J.

Ed1937

Just got back from the hospital. Talked to a social worker, who told me they deal with this frequently. I took paperwork from the MC that needed to be filled out by a doctor, and she said they would accommodate me. They could even keep her in the hospital for a couple of days until the transfer could happen. I shouldn't have to refuse to take her home.

Then I went up to see her. She was a much different person today. She still wanted to go home, but she did not want me to leave. After a short while, she was ready to fall asleep, so I told her I would leave, then come back later today. She was so much different today that I could have easily said I'll take her home, but I'm not going to fall for that. My mind is made up, even though she seemed pretty normal. She did, however, say "I probably shouldn't ask you this, but I'm going to anyhow. How is your girlfriend?". It didn't bother me. I just told her she was my girlfriend, and has been for a looooong time.

toolbeltexpert

Ed I am so glad to hear how things are working out for you and dw. Your a good man.

jfkoc

What a puzzle the brain must be. Bits and pieces that begin to get put together forming new ideas. Glad she was not horribly upset about your new "girlfriend". Also glad  you could quickly put her mind at rest.

Thanks for the update.

Jo C.

It must a blessing to have her so much calmer.   It is a good move that you decided to stay the course; going home may well cause more of the same as always, and also lost the bed in your preferred facility.

If I may make a suggesion; and you may already have done this, if your daughter could assist, that would make it much easier . . . and that is; if you have not already begun labeling her clothing with her name, it would be best to get started on it now.  There are iron on labels, but I ended up stitching them on out of concern they would get lifted off in the wash.  You will also need a good permanent marker pen.

Label everything from outer garments, to bras, panties, socks and yes; even the shoes.  I labeled my LOs shoes on the soles and on one place on the inside.

If your wife wears glasses, they can be etched with her name on the sides.  Also, if she wears glasses, a good idea to have the tether so the glasses do not get as easily lost if she would tolerate it. If she wears dentures, if there is time, also not a bad idea to have the dentist etch her name inside of them - dentures sometimes also wander.

If she does wear glasses, get the prescription and any future updated prescriptions from the ophthalmologist and keep it safe.   Our LOs reach a point at which they can no longer be accommodated by an eye exam, and the latest glasses are the ones which did best, so that is better than no glasses at all.

If one can provide a mesh bag for laundry and the facility is close to your home, you can take the garments home for laundry if you wish to do so; this keeps loss of items much lower. No matter how wonderful a facility is, laundry losses are a fact everywhere.  Always use mesh laundry bags if you are taking laundry home.  When soiled clothing is put in a plastic type bag, the bacteria in them begins to cause bad odors.

 If she has an afghan or other item that she would feel comfortable with, be sure to label those items too.  Even photo frames I labeled on the back as some residents go "shopping."

If hearing aides, be sure to label those and ask they be put into the med cart in her drawer at night or whatever works and always keep insurance on them as much as possible; those small items seem to disappear quite often.

Also, the catalog with all sorts of adaptive clothing for women and men, "Buck and Buck's," will put name labels in all items ordered at no extra cost, and they will shorten hems at no extra cost.  They also have a generous return policy if necessary, even if labeled and hem adustments have been made.  (They have some lovely washable cardiagan sweaters.)

**************************************************************************

True story:   My friends grandmother was in a NH facility.  Unbeknownst to the staff, she got up during the night and wandered into other rooms - she took dentures out of denture cups and brought them back to her own room putting them under her blanket.

In the morning, they found all the multiple sets of dentures in her bed.  Except for one pair that had been labeled, they did not know who the dentures belonged to . . . . I can only imagine the lengthy and severely difficult time that was to get all straightened out. Nightmare.  So; even labeling dentures can be a significant move; and as said the dentist can do this.

J.

Marie58

Thinking about you and DW, Ed. Hope the transition goes smoothly.