Josey

French

Josey, how are you ?

I haven’t seen a post from you for at least 2 weeks I think. I know you are back to teaching and also you are about to place your husband. I just wanted to know if everything was ok for you.

JoseyWales

Hi French, thanks for asking about me. I've found I'm staying away from posting the last couple of weeks because I feel like all I do is cry and complain here. Sometimes it's not that bad, but this is where I find I go when I'm not feeling good. I imagine it's the same for many of us here.

So for the past month it's been a roller coaster. 2 ER visits, 1 urgent care visit and 1 neurologist visit. And just this afternoon I got news there's a bed open at the memory care facility I decided on.

DH is actually *better* in many ways than he was when I posted I was going to place him. He had a change in meds about 3 months ago, and after initially doing well, he slowly went downhill to the point where he seemed like a zombie. Took him off those meds about 3 weeks ago and now he's better, but the paranoia is back. And bathroom problems are increasing. He just doesn't know where to go. Once I get him to the toilet he doesn't know how to use it and almost seems scared to go there. So he wanders around needing to go, but won't. Sometimes he goes in odd places. Middle of the living room, bathroom carpet, corner of the laundry room, trash can (that one I won't complain about!). It's like housebreaking a puppy. Then he had a severe case of constipation. But at least all that poop has ended up in a toilet.

So now I sit here trying to decide when to move him into memory care. Next week? Why wait? But... is he ready? I'm so stressed, so I'm ready. Maybe. Then I think "He won't be here when the crops come off the field so he can walk the field again."  And I second guess myself. Am I just doing this because I'm tired? If we could fix the anxiety issues, would things get better? He just doesn't sit still. And often cries. 

There's just so much to consider. I'm leaning toward placement in a week. But I feel so horrible. It's just that everyone there is sooo much older than he is. And he depends so much on me. I guess that's probably something most of us think. But it just feels like .... the end of everything.

Ed1937

Josey, I know you have been on a roller coaster for a while. Not knowing what to do, and going back and forth between options can really take a toll on you.

 Although I have no experience with this, I'm pretty sure I've read when people have trouble with medications, a geri-psychiatrist is often the place recommended. If I'm wrong about this, someone correct me please.

JoseyWales

No geri-psychiatrists in my area. I do have a referral to a different psychiatrist as of today. Not sure if that will get done before moving to MC. 

I just want to curl up into a ball and let someone else take over.

David J

Josey, I am sorry you have had a bad several weeks. It can all he so overwhelming. If you ate contemplating curling up in a ball and letting someone else take over, then its probably time. My wife has been in respite care for only 8 days, and things are better for both of us. She is eating again, doesn't seem agitated, has plenty of room to walk around, and has already made some friends. My wife is only 66 and her new friends are much older but it doesn’t matter.  My stress level has gone way down and I’ve been able to attend to some things around the house, and attend to my own health. If you can arrange a trial stay at the MCF, you can destress and make a decision when you are calm.

Marta

Excellent suggestion from David J to do a trial of respite, then make a decision. 

abc123

Dear Josey, I’m sorry things are so difficult for you. I hate this disease, it has made me a bitter person at times. I hope things get better for both of you and you find peace.

JoseyWales

Here's my biggest fear about placement. That people will say I placed him too early. And I just need to suck it up and deal with things at home, that it's not all about me. 

I know there are some in my life that WILL say that. And there are those in my life that have already said that I should quit working so that I can stay with him and the consistency along with a better diet will be so much better for him.

But you know what? Those people almost never come over to help me. 

Just whining.

Ed1937

JoseyWales wrote:

Here's my biggest fear about placement. That people will say I placed him too early. And I just need to suck it up and deal with things at home, that it's not all about me. 

If people talk that way to you, tell them to kiss your a$$. That's exactly what I would say.

Stuck in the middle

JoseyWales wrote:

Here's my biggest fear about placement. That people will say I placed him too early. And I just need to suck it up and deal with things at home, that it's not all about me. 

I know there are some in my life that WILL say that. And there are those in my life that have already said that I should quit working so that I can stay with him and the consistency along with a better diet will be so much better for him.

If consistency and a healthy diet are the goal, you should place him.  He will get both in memory care.  

Even if sacrificing your career were beneficial to him, it would be very bad for you.  

People will talk, dogs will bark, donkeys will bray.  That's how they are.  When my grandmother died of medical malpractice, some of her family blamed my grandfather for letting her teach instead of keeping her home and supporting her.  Her work had nothing to do with her need for surgery or with the error by the anesthesiologist, but there it was.  Grandpa just spent a lot less time with his in-laws.  I knew his side of the family pretty well when I was a child, but my grandmother's side were (with one exception) strangers.

I find that my life is better and better as I care less and less what people think.  If you can join my KMA (Kiss My Ankle) Club, your life will likely be better too.

JJ401

Josey, one thing I have learned over the years is no matter what you do as a caregiver, someone is going to criticize. Criticism is much easier than helping. Tune them out. Do what is best for both of you. 

Yes, DH is younger than the typical patient. But, after the adjustment period, you will most likely find age doesn’t matter — function level does. He will be safe. He will have 24 hour care. Yes, he won’t be home to walk the fields when the crops come off. But, on a good day, when you son is home, you can bring him home for the afternoon to walk the fields with you. 

There is a spot in a memory care you like. That is huge. The universe may be telling you that now is the time. 

Quilting brings calm

I agree with Ed and JJ. A bed is available, which might not happen again for a while. You don’t have to make it permanent at first.  Reevaluate after a month or so. In the meantime, rest.  Go to dinner, have a drink, call a friend, read, watch a show, sew a baby quilt. Organize your house. Breathe   

Ignore the naysayers, they are not you and they haven’t walked a mile in your shoes.  Do not quit your job.  You need the financial security and the pension that you will eventually get.  It’s also good for your sanity. 

And we are always here for you. 

M1

Josey, from what ive read of your posts you have no reason to second guess your decision. Life is getting harder here and we're only stage 5. Go for it next week. Get your life back. Either way, we're pulling for you.

Buggsroo

Josey,

Don’t second guess yourself, it isn’t worth it. It sounds your stress has gone way up and you need to give your husband more care than before. It is rough dealing with this disease, we certainly do not need people’s opinions on what is going down.

I am realizing this, I had a stent placed in my right kidney down to my bladder. The pain is unreal and I am living on extra strength Tylenol. I have less patience with his endless questions, his nasty behaviour. I just grit my teeth. It is just awful. 

I try to understand but honestly it is tough. I can see why caregivers develop health problems. 

It may be sad at first but having trained people looking after your husband will be a godsend. Please remember, we are only human. I wish you peace and calm.

French

Josey 

I can understand what you mean. My partner is young also (even younger than yours) and I think he is less advanced than yours. But 2 or 3 months more at home, what will it change for him ? Do you think he is happy at home ? And for you ? As me you are working and caring. I think that placing him will do more good to you than it will hurt him.

 As the others, I also think you could do a trial, at least the time to adjust his med and to rest. You will know how he adapt. 

yes I also sometimes feel that people are judging me… that I could keep him at home longer. Yesterday I was with friends and I clearly felt that one of these friends was thinking I was lacking empathy. It made me feeling guilty. Yes, my partner is very easy but do they imagine what my life is. 

Only people who have taken care of your husband at least one week can know what it is (and I imagine they are not numerous). My partner’s brother and SIL did it 10 days and told me to stop. His best friend did it also 10 days and also told me to stop. They think he need a constant attention I can’t give while working.

If somebody judges me, I will ask where he/she was, if he/she has tried to take care of him. Don’t let people judge you.

JoseyWales

Thanks everyone. It's nice to have the support here.

French- You're right about not knowing what's going on unless they do this for a full week. Day and night. Other than my son, no one really understands.

So here's the deal now. My son has Covid. He's had to leave his dorm and come home to quarantine. And while DH and I have been vaccinated, I don't dare try to place him in at least 3 weeks, because I would feel horrible if he or I brought Covid into the facility. 

In addition, it turns out I've had some bad advice from my eldercare lawyer. Nothing that can't be straightened out, but it will take time. And I feel I need a new lawyer, and getting in to see one will take a while. 

I've also had bad advice from people here - nothing that wasn't given in good faith. I understand that situations are different across the US. It's just not what I'm experiencing here. In my case, I need to have DH qualified for Medicaid LONG BEFORE placement. Time after time people here say to wait until placement or you won't find a place. That's just not true everywhere. Honestly, I wasn't going by what everyone was telling me. but it seemed that waiting to apply at placement agreed with what my lawyer had told me and with what I'd heard here. I was so wrong. 

The other thing I hear here is to get a geri-psych. Again, those aren't available in my area of the US. But I do now finally have a referral to a psychologist who will work with people with dementia. He wasn't someone I could get into without a referral.

So it looks like I'll have DH home until at least Christmas, which was my original plan anyway. His behaviors have improved since our ER visits for some real pain/constipation and, after today's visit, UTI. (It's new - they tested for UTIs at all the other visits). If I can get behaviors to improve, I can make it until Christmas. As long as we don't get seriously sick from Covid in the meantime.....

French

I hope these 3 months will be acceptable and that you won’t catch COVID-19. It seems that even vaccinated people catch it.

Here I find that all the administration is complicated but it seems it is worse in the us. I don’t need a lawyer, social workers helped me and everything went easily. I regularly update his progression so that we can get more subsidies. 

For MC there will be no more subsidies. It’s only for people over 60. But his pension will cover the fees. 

M1

Josey, I am so sorry your son is sick along with everything else you're facing.  Fingers crossed for you.

Quilting brings calm

Josey…. I agree you can’t place your DH until after the quarantine period. Because he could test negative today and positive later on in the incubation period.  Plus while his system is fighting the UTI, his immune system might be slightly compromised.  The MC would possibly tell you no if he had been exposed within 14 days anyway. 

What about your workplace?  Are you required to stay home for a while now too? I know the rules are slightly different if you are vaccinated. If so, at least you can maybe rest during the day if your spouse keeps you up at night. 

I imagine each facility has its own rules regarding Medicaid. I think true nursing homes in my state accept Medicaid pending because they are very well versed in the rules and can tell for themselves if someone will qualify.  Up here it’s hard to find an MC that takes Medicaid. Plus your spouses age is probably a complicating factor in the Medicaid process too. 

I hope you all get through the next few weeks with minimal symptoms, and minimal stress. Getting your spouses UTI treated should help with his behavior issues. It’s quite possible that he’s had the UTI for a while even though he was testing negative.  My mom sure did when her issues started two years ago.  

Keep us updated. 

Virgil61

Hi Miss - I posted on here a few times (you might have noted one or two).  I had the same feelings - won't bore you with the details since you already know the gist.  I wanted to say something though: What helped me to make my decision and stick with it was this - my wife lives in the present.  She has almost no thought of the past or future unless someone brings it up.  Since she has started to adjust to MC, this is even more noticeable.   Every day she has activities that it was impossible for me to provide - as well as company to enjoy those activities with.  The director at the MC told me, "People with dementia are confused, they will always be confused.  We provide an environment for them to be 'pleasantly confused '".  On another note, in my 60 years I have known many older people with dementia.  Many.  Never, in all that time did I understand (or even contemplate) what it was like to feel the loss of a spouse and the feelings like you described like until it happened to me.  There is no way that most people will either, unless this happens to them.  It just cannot be explained to most.  I don't know if this helps or not - just wanted to opine and let you know what helped me and provided some clarity (which is improving daily).  Best wishes.

Ed1937

Josey, I'm so sorry to hear about your son. Hopefully he will have a very mild case. Please keep us updated on this and how your DH is coming along.

JoseyWales

Virgil61 wrote:

 The director at the MC told me, "People with dementia are confused, they will always be confused.  We provide an environment for them to be 'pleasantly confused '". 

Thanks for your perspective, Virgil. I'm going to remember this quote, I've never heard it put that way. And it rings so true. I do notice he gets bored at home, and I think the activities that the memory care can provide - plus the company - will be a big benefit.

T

JoseyWales

So here's my Monday update. DS had a fever Friday into Saturday, but it's gone now. DH is totally confused by DS being here, mainly because he no longer knows who he is. He thinks someone is in our house who doesn't belong. It's like walking a tightrope taking care of DS and DH at the same time.

Add in that I think DH had a UTI. We did a visit to a walk in clinic and he's now on antibiotics. The urine sample didn't show a UTI, but was cloudy and with his other symptoms they put him on the antibiotics. This afternoon DH is much clearer headed - some of the best I've seen in several weeks. That's good. Now I just need to monitor our temps and hope neither of us get sick. 

Quilting Brings Calm - you asked about my workplace. Since I'm vaccinated I just need to wear a mask for the next 2 weeks and monitor any symptoms. I'm also going to stay 6 feet away from all my students, which will make teaching a bit tricky, but I can do that because I'm with small groups most of the day, with no one with me more than an hour total a day. That way if I do end up symptomatic no students will need to quarantine.

Ed1937

"The urine sample didn't show a UTI, but was cloudy and with his other symptoms they put him on the antibiotics."

Just in case you didn't know. It sounds like they did not run a culture, since the result was given so soon. Without a culture, they can't be sure the antibiotics they prescribed is the best thing to use for the infection, if there is one. The wrong antibiotic might not have any effect on the infection, if there is one. If there is no improvement, you might want to consider another test with culture. I don't know how you do it all.