He told me to leave again

JoseyWales

For the second time, DH didn't recognize who I was and told me to leave. Only this time it happened at 11:00 at night, and he told DS to leave, too. 

DS went upstairs into his domain and hid out. I left the house with my keys and cell phone and went to my shed. It's a nice pole barn, dry storage and has a couch. I could have easily spent the night there if I wanted. I stayed an hour, and kept in contact with DS to make sure all was ok with him.

After an hour I noticed the lights flashing on our truck. DH was outside trying to drive. He had no keys (they're hidden) and had turned on the flashers and lights. He said he saw me "down there" and had all kinds of strange ideas in his head. I got the keys and we went for a short drive, and he calmed back down after a short time.

When we got back home, he was willing to let me back in the house and I convinced him that no one else was home. Things are back to baseline this morning.

Here's where I wish there was a doctor who could help me with this. What do I do now? This is the second time in a month, so I feel it will happen again. What helps? Increase meds? Just plan to sleep in a different spot? (probably won't help, he REALLY wanted me to leave.) Is this going to get worse? Am I just crazy to think that a medicine change will make it go away? Why can't I have a spouse who just accepts that he doesn't know the people around him but knows that we care and is ok with us being there???

And what do I do to protect DS? This breaks my heart for him. He moves back to college in 5 weeks, and last night was the first time DH didn't know who he was.  DS was very upset, understandably. I just want to protect his heart.

Quilting brings calm

I’m so sorry that you’ve reached this point in this awful disease. 

In terms of your DS- the sooner he can go to college, the better.  If it weren’t for this virus, I’d recommend you to encourage him to  visit an out of town college friend, why?  because the sooner he can get back to what feels normal for him- college and his friends - the better his mental health will be. It’s kind of like when you are at work and don’t have to think about  home for several hours every day. 

My only advice for you is something you don’t want to hear,  it may be time to consider placement.  Asking you to leave, going out and trying to start the truck.., those are placing himself in unsafe conditions. Wandering may start soon.    I suppose you could try a completely new caregiver 24/7, but he’s likely not to trust them either.  

However, remember, an assisted living environment is what I decided was right for my parents. So I may be  biased. Others here are much more knowledgeable about keeping people at home than me.  

LadyTexan

Dear JoseyWales.

I have no answers for you. I am so sorry this is happening to you and your family. You are brave, compassionate and resourceful. Your DH and DS are so fortunate to have you in their lives.

May God comfort you and bless you with a better day today.

-LT

JoseyWales

Thanks to both of you.

Quilting brings calm- just because I feel led to tell you - 1/2 of the space in that pole barn is set up as a quilting studio, and includes a longarm quilting machine. I've spent many happy hours there, and used to quilt for extra money when I was a stay-at-home mom.

I know there are places DS can stay until school starts. My parents live only 1/2 mile away, and he could easily stay at their house. There are other options. It's just that... this is his home. Together we've been through the last 10 years as DH has declined. 

I always imagined that when the time came that he'd forget who I was, he'd still accept my help. 

Quilting brings calm

A long arm quilter! You are my hero. I depend on my quilter to turn my tops into something beautiful.   I just started piecing quilt tops about 8 years ago.  Only now getting brave enough to try doing actual quilting of placemats etc.  My prior sewing experience was a junior high sewing class - didn’t go well. My SIL got me started after a couple decades of resistance.  It gives me a sense of peace these days.

My sewing ‘studio’ is my younger sons old bedroom that I finally claimed, but that’s also where all the extra furniture seems to gather.  Still better than the dining room table and a closet of fabric. 

JoseyWales

Before I started quilting, my only experience was also a jr. high class- and my mom finished that project! My mom was the one who told me I should try quilting. I just collected fabrics for a while, before I tried anything. She talked me into going to a class. I got hooked when I quit working to stay at home with my son. I turned those fabrics I'd saved into blankets and Christmas gifts.

When I first saw a longarm machine, I just had to have one. I quilted for others to pay for it, and have a tiny bit of extra income. But mainly it was so I could own one! I'm sad that it just sits now, but I can't get rid of it. The time will come when I can quilt again. I have only done 2 quilts in the last 2 years, both baby quilts. I have so many plans...

Lorita

Hi Josey,

 This may be a passing phase - no way to tell right now.  It may never happen again - we never know.  Sounds like you have a safe place to go and be comfortable.  Just be sure you keep the keys away from your husband.  Do you live in the country or town?  If your yard has a fence with gates, you might want to lock those.   We live in the country and there are six gates to our yard.  I kept all of them locked when Charles began to take off for no reason.  It worked.  He'd go to the gate and shake it but the fence was too tall to climb over.  All dementia are the same and yet different - some go through phases and others don't.  Just have to go with the flow and figure out things as they happen.  If he has a PCP, ask him about possible medications. 

 I remember the first time Charles didn't know me.  We had gone to the grocery store and he stayed in the PU. When I came out he was gone - guess he went in one door and I came out the other.  I found him inside looking at something.  I said his name and he looked at me with this blank stare - just for a couple of seconds, then he knew me.  That was the only time he didn't know me - just for an instant.

 My mother had alz. and I remember the first time she didn't know me - it was heartbreaking but within two or three minutes she recognized me as her daughter.  I thought it was strange that she didn't know me but knew Charles - she always knew him. Maybe it was his voice, don't know.

 Good luck with whatever you decide.

JoseyWales

Thanks for your input Lorita. We do live in the country, but no gates or fences. 

He has an appointment with his PCP in about 5 weeks. The PCP is willing to work with medication, and since I've seen an increase in agitation at night, I was already going to bring that subject up.

I'm hoping it won't happen again, but I don't have high hopes. He's not recognized me in stores like you described several times, especially when we were wearing masks.

jfkoc

I piece and quilt by hand and am obsessed with  Gee's Bend.

Now back to your post.

If he was upset because you were a stranger in his home you can try leaving, putting on different clothes which you have left in the "shed" and entering to home with "hi honey...I'm back home."

This trick has worked well for some.

Ed1937

Hi Josey. Amy-n-joe had a post within the last few days, where she mentioned a supplement that was recommended by her therapist. So thanks to Amy for sharing. I have no idea if this would benefit someone with dementia, but here is a link. I found it interesting. If you should try it, check with doc first to make sure it's ok. This is only one link, but there are other sites mentioning the benefits. https://www.prohealth.com/library/natural-support-for-mood-sleep-and-mental-focus-l-theanine-28839?site=articles  

Mint

Josey understand you wanting to protect your son’s heart.  He may well feel the same way about you.  I am so sorry.

M1

Josey I'm so sorry.  Given that it seems to be nighttime agitation, I wouldn't wait five weeks--I'd call the doc on Monday, see if they'll do a med adjustment/change over the phone.  It might buy you a little bit more time.  I don't know if you've mentioned what he's taking, but this sounds like an extreme variant of sundowning.   Can't hurt to call.  My partner forgot my (grown) kids yesterday.  It hurts, I can only imaging your son's distress, not to mention yours.

1962ART

jfkoc wrote:

I piece and quilt by hand and am obsessed with  Gee's Bend.

Quite by accident, I saw a Gee's Bend quilt exhibit at the Denver Art Museum a number of years ago when DH was still traveling with his job.  It was quite an education for me.  I am not a quilter, but the celebration of those women's art form filled me with wonder.  During the depression, my grandmother took wool samples for men's suits and pieced them into blankets.  We always called them "camping blankets" because we used them that way.  This was up until a friend who ran an art cooperative told me thee crazy blankets were really works of art!

abc123

Dear Josey, I’d just like to say that I hope things get better for all 3 of you very soon. Do think about calling the Doc on Monday. If he makes an adjustment or prescribes a new med, by the time y’all see him in 5 weeks, the meds will have had time to get into his system and you might notice a change by then. (Was that a run on sentence?) I do hope things will settle down and all of you will feel better, especially your son. How old is your boy and what does he study? I bet he’s a fine young man. 

PS I am envious of your pole barn. 

JoseyWales

Thanks everyone for the advice. This really like following a path in the woods, at night, with no flashlight, in a thunderstorm. I think I'm going to get a hold of his doctor next week, and see if anything can be done about medication without a visit. 

I love Gee's Bend quilts, and I love the story behind them.

My shed has been neglected the last few years, and has become more storage than quilt studio. I would really like to spend some time down there organizing it. 

DS is about to turn 21. We adopted him internationally when he was less than a year old. He's a fabulous musician, and has a part time job giving music lessons. He's changed majors a couple of times, and I'm not 100% sure what it is now. Communications, maybe? It's been wonderful to watch him grow up and turn into the man he is now. I know his teen years have been hard for him, but he never gave me any of those teen tantrums. There are times I wish he would, so I'd know he was normal!

sixcats

Hi Josey,

Your original post resonated with me. And your latest post - it’s so awesome to hear about your son. Wow. How truly wonderful to have a son like you have. 

Seeing your first post, it is my opinion only, based on my personal experience, it might be time to place your spouse in a well regarded memory care facility. 

French

Dear Josey, 

Your son is the same age as my older son who has been living to is father 8 years ago. At home I have my daughter, 19, and my younger son who will soon turn 16. My partner is not their father. They could have the choice to go to their father as their brother did. I don’t want to lose them too. They will always be my priority. I also know that they will tell me if the disease takes to much place in our life.

We often discuss. We have time at lunch when my partner is at the daycare. I think it is important to trust them but also to protect them. Their opinion is important but we have to give them limits. He can help, care for his father but he also must have a normal life. I know that normal life this last year wasn’t normal and perhaps as me, it gave you a kind of suspension. 

I imagine that you son doesn’t like to let you alone and it will be difficult for him to go back to the university. Perhaps some holidays would be a good transition. It is important to be sure that he won’t feel guilty.

HSW

I had 3 steel framed solid wood doors installed with dead bolts on the bedroom doors. Different keys. I told my son at the beginning of our journey to always agree with him and he has never been a target. He is such a good kid, when I get resistance he will come out with just the right comment" that lady" to redirect his father.  

When DH first started not knowing me he always assumed I was working for him. He would want me to leave and fire me. Then he would say he would report me in the morning. Medicine helped him stay asleep but it took a long time for my fear to go away.

Now he doesn't know us or many in his family. However he doesn't want me out of sight except when he goes to bed. We have been together since high school...40 years. 

JoseyWales

French - Yes, I want that normal life for our children. I am happy he's going back to college and will return to "normal". I don't think he'll feel guilty, but then again, I don't know. It's nice to have him to talk to here, because I think he's the only other person in my life that gets what we're going through. But I don't share it all with him. His college is only about an hour away, close enough for a visit for a few hours when he wants to.

HSW - it is like DH thinks I work for him and is telling me to go away and come back in the morning. I'm hoping he gets past this, because if he doesn't I'm not going to be able to keep him home much longer.

JoseyWales

**update**

I sent a message through the online portal to DH's PCP last night. This morning DH wanted to go for a drive - and wanted to be the one to drive. I wouldn't let him, and went through our normal routine over driving. For the millionth time. But this time DH got super upset and started to walk away down the road.

We live in the country. I watched him for a while, then followed. At the mile mark he noticed me following, and he decided to go up someone's driveway to get away from me. It was a LONG driveway, and he didn't want me following him, but what were my choices at this point? I didn't know these people, and I knew he couldn't find his way home. So I followed and got him turned around. He didn't want me following still - but I managed to get him headed home. Once we returned (1 hour and 15 minutes later), he had calmed down. It helped that he found a turtle on the way and brought it home to take care of. It's currently contained outside until I can relocate him.

DH's Dr. responded to my message a short time ago. He's sending a new RX to the pharmacy. As soon as I get that text that it's ready, we're off to the store for it. Immediately. 

Quilting brings calm

Josey - you are having a  really rough week.   It’s very hard to think clearly in a panic situation  like that. You did a great job. I hope the medication helps.

JoseyWales

Here's the funny thing about panic. I wasn't panicked when he took off walking down the road. It's not uncommon for us to go on 2-3 mile hikes, and he walks rather slowly. So I went and grabbed the bug spray before I started after him. At the 3/4 mile mark, I was thinking what a beautiful day it was, how that slight breeze offset the heat and that I was actually enjoying the walk down our country road. And then he turned and saw me, and started up that driveway. That's when I panicked! Rural Indiana, gun owners.... and DH trying to hide in trees.

M1

Glad the doc responded so quickly.  Fingers crossed that it helps.....

Ed1937

Something has to go your way pretty soon. Let's hope this is it. You've had enough!