Terrible week - its gotta get better
I just shared this in a different thread. "Long story involving lockouts (me, in the garage/him barricading door), attempted 'carjacking' by DH, and a wandering episode (complete with police rescue)." This has been a week like no other for us, so far:
I don't know if its another UTI but its been crazy around here. My LO is trying things he hasn't even thought of for at least a couple of years and it is scary, exhausting, and made me almost crazy a few times in the last week. These are things he had seemingly forgotten about plus some things he's NEVER done, but in the last 4-5 days he has suddenly:
- turned on a burner when I wasn't looking. left it and walked away...no pan on the stovetop thank goodness. Would have been an oil fire for sure. I just happened to notice.
- got out of the car while I pumped gas, and into the driver's seat. Would have driven away but couldn't figure out how to start it up. Kept demanding the keys (as if!)
- locked the backdoor while I was placing something in the garage. Barricaded it & wouldn't let me in. (I always keep my keys on me but couldn't open the door til he walked away 15-20 minutes later). No talking, phone interventions, etc. would help.
- microwaving (again). Pushing buttons randomly; way too much time for 1/2 cup of tea
- time traveling. Having many imaginary convos with dad or mom (gone for decades)
- maybe we can't run errands anymore. Again, he jumped into the driver's seat instead of his side. This is new after almost 3 yrs. Cursing me, holding the door shut so I couldn't open it. pushing buttons, trying to shift into gear (I never leave it running, ever now, thank goodness.) He wasn't asking to drive us. Was going to take off without me.
- -----Wandering (but 'purposeful wandering' I guess?)------
- After that, he got out of car and took off walking. Going "home" (though that's where we were to begin with). I quickly caught up in the car, and drove slowly around asking him to let me take him. I won't share the 4-letter lingo here but his response was nasty. Cut through random people's backyard so I lost line of sight. (Lucky they didn't have a dog, or a gun since a stranger technically squeezed through beside garage opening and fence, and broke into their backyard, strolling through looking ready to fight. Glad they didn't have kids or anyone in the yard at the time. Who knows what may have happened). I circled the block and caught up with him quickly but he again refused to get in. He crossed a very busy street -- sort of looked left and right, but traffic was blowing the horn at him at one point. By then, I was talking with police non-emergency for options in our "dementia-friendly" community.
- --------- The great escape took the cake. ----------
- So, I who try very hard not to do 911, had to call the local police for help to catch up with DH while I obeyed traffic lights and signs, all while trying to keep dispatcher informed of his whereabouts and direction of movement, while asking for a mental health dispatch versus the gun crew.
*** This seems like a new normal, or at least way more volatile repertoire of behavior. He flat out would not cooperate with me AT ALL, and got very combative and hostile, both when locking me in the garage (& leaning against the door to keep me outside), barring me from the driver's seat and car, and then taking off on foot. Had they not been able to help talk him down, the next option was ambulance transport but it would only have been to the nearest ER which has no neuropsych...would have been blood tests, needles and iv thinking that would keep him stationary but that would not have kept him. (Been there, done that, have the story of that hospital escape to prove it).
This is too long. I'm stopping now, though mind is still whirling. Its why I don't post sometimes, when in the middle of dementia drama!!! Anyway, I know you all will understand. (I just re-read the title of my post, and am shaking my head. We know it won't get better. What was I thinking.)
This makes me so sad. Yet we were so, so lucky. Any of the above could have ended much worse. Be safe everyone, and take care of yourselves and your LO's. May Father's Day bring some peace and comfort to you in some way, for a moment at least.
Comments
-
So, so sorry BW. What a horrible time. It does sound like geripsych admission is appropriately on your radar. Do be careful for your own safety please.0
-
Oh my; it is hard to find sufficient words! I am so very sorry; what a dreadful, dreadful time you have had; syou must be exhausted on all levels. But the worry I can well imagine has not ended.
It may be that it would be best to find out if there is a UTI or other medical issue causing or contributing to this ramped up behavior. If you hire someone, it is unlikely they would stay if the behaviors contiue; it would be considered dangerous for them.
If there is no physical cause for this behavioral situation; it may be that medication adjustment is necessary; I cannot recall the type of dementia your husband has; so it would be important to have the right meds that are not contraindicated for his dementia type. Hopefully his diagnosis for type of dementia was made by a dementia specialist.
If you find that the behaviors continue, it may be that having him be admiitted to a short Gero-Psych stay would be in both your best interests. This is surely a difficult situation. Might be worthwhile to contact the GeroPsych Unit and speak with the supervisor re admission if it becomes necessary and how that process works from the very start.
Please stay safe; hopefully you have put away anything that can be used as a weapon; knives even kitchen knives; scissors, hand tools, etc. Keep a cell phone on your person. It may be a good idea to remove the knobs from the stove and to unplug the microwave. I am so very sorry; this is an awful lot to be dealing with. If you still share a bedroom, will you feel safe? If you are now in a separate bedroom, is there a way to lock the door or put a chair under the doorknob? Our LOs seem to find ways to roam about at night without our waking up if there is no alarm to alert us.
Take good care of you and your safety; let us know how you are, we will hope for things to settle for you.
J.
0 -
Butterfly Wings-
I thought I had a tough week until I read your post. Wow! I am so sorry you had to deal with all this, but now the police have your DH on their radar and I hope with a photo of him for future calls. I can only imagine how stressful that was and I agree you were lucky it turned out ok. I also have considered not taking DW on errands, but it’s tough. Sometimes you just have to go to the supermarket and can’t wait for respite day. It sounds like you handled it well and I hope it things calm down this week.
0 -
Oh my goodness! That is a whirlwind of unpredictability and frightening behavior. The car scenario must have been incredibly unsettling. This journey is so very tough.You persevered. And you stayed safe. Please pat yourself on the back.May you have some peace today to catch your breath and recharge.
God bless you.
0 -
I am so sorry, this sounds just awful.
My husband hasn’t gotten to that stage but he did go walkabout to the dentist. Sadly I thought he was cognizant enough to go on his own, he ended up getting lost and I had to call the police. They were amazing, stayed the whole time and six hours later he was found. It put the fear of god in him. I have called the police to come and take a gun he had when he was a farmer. Luckily no ammo is in the house.
I can’t imagine how much stress you must have gone through. I hope things have calmed down for you. Good luck, it does sound like his condition has deteriorated.
0 -
Butterfly wings you are living my life. I went through almost all of your experiences this week also. The walking through yards is one of the scariest. It was dark and he tried to get in someone’s house. I didn’t get the police because my son came and we tracked him down . When he is one of his hostile moods he pushes me out of the house and the sight of me ignites lots of cursing yelling. It is so hard . This guy is nothing like my husband. My husband is very quiet does not call names . Barely ever raises his voice and HE is here about half the time. I call it Mr Hyde. For a long time he just gave hateful looks but now He’s here a lot. I have a fake car key for him because it’s important to him to have keys and he would have definitely left in the car if he could have. I actually sleep with my cell phone, car key and billfold in the bed by me in case he should surface in the night. I leave when he gets too volatile and he calms down quicker if he can’t see me. I generally park where I can see our house but he can’t see me.
We’ve been married for over 50 yrs and all but the last one have been really good. We have been on this journey for 7 yrs. Bur Mr Hyde only came the last yr. I’m ready for him to leave
One bright spot is I’ve met some very companionate policemen and firemen..
0 -
I’m sorry you have to deal with all this. It is heartbreaking. But you’re not alone and don’t be afraid to tell your stories to friends who really want to hear past the one sentence reply. It helps to have people who are aware of your journey. And then there are the days where you’re not up to much of a reply to “,how are things going “ and they’ll understand.0
-
ButterflyWings,
I am so sorry you are experiencing these incidents with your DH. I have been following your posts for a while because so much of what you experience with your husband I have also experienced with my DH. It is so stressful and heartbreaking to live this way and brings back recent memories of some horrible times I went through with DH due to this disease, and thought I could not go on one more day dealing with the stress and anxiety. When I read your Sunday, June 20th posting, I felt that it is sad someone else has to go through all of this as I did, and that the stage of this disease would move on quickly to a more manageable one for you. If my DH continued in the difficult stages for too much longer I know much more would have had to be done because there was really not much more I could deal with other than to keep him medicated and become a watchdog 24/7 over every move he made.
DH is now on hospice in our home because he became dehydrated 3 weeks ago due to not drinking or eating and then became very weak and could not walk or barely move, so off he went to emergency where they administered fluids and then admitted to the hospital. That event seemed to change everything. The hospital would not release him unless we brought in hospice and that was all set up before he came home. He is still weak and does not walk on his own, and does not eat much but does drink Boost, Gatorade, eats ice cream and soup. He has lost 65 lbs. This stage is now the easiest of all and his personality is much more pleasant, and of course has to depend on me for everything. There has been a real change in what I have experienced for so long....and I feel I am finally getting some of my life back.
What I do want to share with you is that there were times during this progression of Alzheimer/Dementia, my husband became a wild man at times even when he did not have a UTI. He went through stages of wanting to break things, locked me out of our vehicle with him in it, along with my purse and keys. Would become angry and combative, throw food and beverages, locked us out of our bathroom, has made our interior doors not open and close properly because he would lean on the handles and try to remove the hinges. Nothing was safe in the house and I had to hide so many items that now I am finally finding some things since he can no longer roam around to do whatever pleases him to damage and/or remove items from the house to the backyard and over the fence.
He did wander along the street and into yards with the neighbors bringing him home. I had to put locks on all the back yard fences and made sure he could no longer go into the garage by locking the side door to the garage. All keys were out of site, and I had to go so far as to put extra locks on exterior and the basement doors. It came to the point I could not even take him anywhere in the vehicle because he would keep removing his seat belt (I had to purchase a special lock for over the seat belt lock), and he would want to always open passenger door to escape. I always felt like I was dealing with a mischievous 4 year old boy.
I have gone through the worse part of this disease with DH for about 2 years. DH was diagnosed 4 years ago and my life has never been the same as I am sure most caregivers will agree with when it comes to their own lives. We have had to rely on Seroquel - with dosage increased over time. Antidepressants did not work for him but I am thankful for the Seroquel wen I could hide it in his drink or food since he refused to take and medications.
When my husband had a UTI in 2020, all he did was sleep and could not stand or walk. We called the ambulance to take him to the ER. He was very combative there and although he also has Primary Aggressive Aphasia that this disease has brought on, he new how to swear and fight off everyone. By the time he left the hospital after being admitted for 4 days they were glad to see him go. He would keep setting off the alarm on the bed, pull out IVs, fight off the nurses, etc. What I have found out is that our local hospitals now provide sitters 24 hours in the hospital that are covered under his medical plan. That would have been nice to have in 2020 when he was admitted.
This disease definitely changes the personality. My DH was always the easiest going, well-liked person with a personality that was admired. When he became diagnosed by the neurologist I could see what the progression of this disease was doing to him and robbing him of memory, speech, reasoning, personality, etc., and was replaced by stubbornness, change in appetite, aggressiveness when he felt things were not going his way even when I had no idea what the issue was, and unable to focus on anything for more than a few minutes. He would wander all day until bedtime through the house or in the fenced in yard. He would never sit down even for a meal and it would take a lot of patience on my part to get some nourishment in him. And...he would turn on microwave (with nothing in it) and turn on gas stove during his wandering episodes. I had to unplug microwave and put the plug behind the appliance and remove all the knobs on stove and hide them so that this would not happen again.
If he could have known in his mind what person he had become due to this disease he would have been devastated.
I will keep you in my thoughts and hope the stage your husband is in now will soon pass so that both you and he can have a more peaceful time dealing with this disease.
I
-
0 -
Wow, that was one bad week for you! I hope you get a chance to unwind.0
-
I am now learning just how lucky I am! Sorry you had to go through all of this. I hope things get much better soon. Stay safe!!!!0
-
All of his reactions sounds like he doesn't recognize you as his wife or caregiver and doesn't know his home. I made my DH a contact card with pictures to carry. You can get welcome mats with your last name. I put his name on his bedroom door and added family pictures around the house. I never had a problem while we were out other than when he felt more independent and took off at every bathroom sign. At gas stations he still gets out to help so I never had to worry about him locking me out.
0 -
I agree, he no longer recognizes you. He sounds like he thinks he is being held hostage in the home or in the car, and he needs to break away to return to his long deceased family. It can help to understand the motivation.
Iris
0 -
butterfly. I remember my Moms UTI that signaled the start of this non life we are living. It went about as well as your week did- including the police bringing her back to their apartment after she wandered at night. My Dad was asleep. That was the deciding factor in moving them back to our home state.I hope you get some peace- a diagnosis of UTI or a medication change. A few more weeks like this and you will be the one needing the medication.
0 -
(((ButterflyWings))), Hoping this week is a little more peaceful.0
-
Thank you all for such good counsel as always, and for the well-wishes. I have popped in here a couple of times to read your posts but did not get to sign in and reply yet. Since I first posted, it has been a continuing roller coaster that came really close to running off the rails a couple of times.
I wanted to give you an update now that we have some answers. The short version is: after 3 more days of barely contained chaos, DH took off again yesterday and we ended up in the ER where they found...yes another UTI!" omg - So, the good news is we are now taking a different antibiotic since Bactrim wasn't doing the trick. And, they tore up the petition that I worked with a local counseling svc to get delivered to me, the paramedics, and the admitting team. The ER Dr on call had been in the process of finding the appropriate geripsych unit for further transport from ER, to place DH for a few days and get him stabilized. Then the urine culture provided some answers, which is a blessing.
So, it has been another crazy week here, but reason to hope for improvement over the particular drama we have been living, 36+hour days lately. This is really just so bizarre. I don't know if the uti's are connected with his new(ish) hygiene issues but need to figure this out. Also, it is confirmation that his current PCP is not up to the task. I've been begging and waiting for a few weeks now, for home nurses visit to ensure his vitals were checked, and another urine sample with culture taken, to confirm that his last UTI did indeed clear. PCP didn't think it was necessary as of last Friday. Hhmph. I have been calling, talking with various team members til I'm blue in the face, trying to get him help and suggesting that was probably a key step.
There's more details for how stressful this has been but I will share more later, and process it all in due time -- from me not sleeping much, to having barely caught DH before he drank the cup of blue liquid (poured mouthwash in 1 of his multiple drinking cups), hosting the rest of the local police force, and the paramedics, and firefighters called to our house for the transport. Neighbors we don't know, side-eyeing us (can't blame them). My day job (thank goodness for the mute button on Zoom calls but I've been afraid of falling behind)
Your responses helped me keep going these last few days of fast talking and diverting DH to keep him from taking off, or losing his temper with me which he was still doing between time traveling and hallucinations, demanding to see people who are deceased, and overall real uncooperative behavior (understatement). THANK YOU.
M1, I thought about you and the driving struggles. Wishing you well with your LO. LadyT, as we waited for them to find the right geripsych unit, I felt the sadness and worry for him that you recently went through. JoC - he has AD, diagnosed by a dementia specialist via spinal tap. Yes, I disappeared bats, knives, big garden tools a while ago and try to stay out of arms length when he is angry. I stopped sleeping the same room when his hallucinations started 2 yrs ago during his first UTI. Bugsroo, glad you got rid of the gun. Jude, everything you said. KatieKat-wow exactly! I am sorry, but glad for the respite his current stage is providing for you both. David J, DIY, Ed, and Sayra thank you for your positive energy. It helps so much. HSW and Iris, yes, imagining what he must be thinking helps me empathize while trying to figure out the next move. Quilting, you were right! Now we wait for new antibiotic to kick in.
Applying everyone's good counsel for the next time. We know there will be one =|
0 -
BW, I suspect you are on the right track that recurrent UTI's are almost inevitable given the hygiene/incontinence issues. I worry about how much longer you can go on like you are. Very hard to catch and treat every time.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more
Categories
- All Categories
- 456 Living With Alzheimer's or Dementia
- 228 I Am Living With Alzheimer's or Other Dementia
- 228 I Am Living With Younger Onset Alzheimer's
- 13.7K Supporting Someone Living with Dementia
- 5.1K I Am a Caregiver (General Topics)
- 6.6K Caring For a Spouse or Partner
- 1.7K Caring for a Parent
- 143 Caring Long Distance
- 102 Supporting Those Who Have Lost Someone
- 10 Discusiones en Español
- 2 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer de Inicio Más Joven
- 8 Prestación de Cuidado
- 1 Soy Cuidador (Temas Generales)
- 6 Cuidar de un Padre
- 22 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 6 Account Assistance
- 16 Help