Saturday, September 30, 2017

Dementia Decides to Take a Long Walk

It's hard to know where to begin. It's been an incredibly intense couple of weeks. Dementia intensity; it sometimes takes my breath away. It can be heartbreaking, frightening, and incredibly sad all at the same time.

Jim has had a few medication changes over the last couple of weeks, trying to get the right combination/dose to help Jim through this next stage of his life. Things became so difficult, that at one point Dr. S. suggested an admission to stabilize his behaviors and fine tune the medication. The only problem with this is that it cannot be done as a direct admission, it must be done through a visit to the emergency room under a crisis situation. (Dr. S. does not work out of the hospital and therefore not able to arrange for a direct admission.)

I dread the thought of this. It would be terribly traumatic for Jim, and for me too.

Jim started a new medication 12 days ago. On the pill bottle, there was a small sticker that said "Take with Food". Seeing this, I assumed that food was needed to prevent an upset stomach. The medication is a twice daily pill, once in the morning and once at dinner.

Jim has never been a breakfast person, but I offered (and he took) a banana with his morning pill. I was dismayed to see a worsening of Jim's behavior with the new medication. He was highly agitated. Once I had to call for some help from the safety of a locked bathroom.

What I eventually discovered through the help of an internet search was that this particular medication requires eating a minimum of 500 calories when taking the pill. Otherwise the pill is not absorbed; it would be as if it were not taken at all! The label on the bottle should have said "Take with a Meal". I also take responsibility however, that I did not research this well enough myself. It's totally unlike me to not be thoroughly educated on new medications. Lesson learned.

So for the morning pill, I've set out a banana, two yogurt, ice cream and a couple of cookies for good measure. He eats it! He loves all of these foods, and I was hopeful that he would eat enough for the pill to be absorbed. He might be gaining some weight, but that's OK.

Since my discovery, he seems to be calmer. However the delusions and hallucinations are so very present most of the time. He sees a lot of people and many times during the day does not know who I am. But then he'll unexpectedly break back into reality and know that I am Carole.

The other day he was convinced that he needed to"go home". I was not Carole, and he needed to leave immediately. My usual tactics of sweet talk, "let's have some ice cream before you go" etc did not work. It happened to be one of those rare very hot days for September, 88 degrees Fahrenheit.

Out the door he goes. At first I wasn't worried, as whenever he has done this in the past he tires quickly, and by the end of the driveway turns around and comes back home. But not this time! I quickly took off on foot, trying to get him to come back home with me. He became pretty angry at me and more determined then ever to keep going. At this point I turned around to go back and get my car.

I turned out of our development, onto a road that is not terribly busy, but intersected with a major road with a busy intersection. I called 911, explained the situation, and they were ready to send someone to respond. While I was still on the phone with 911, my friend Julie just happened to be driving down the road, towards Jim. At this point I notified 911 that I thought the situation was under control, but would call back if help was needed. I really wanted to avoid a confrontation with police. Julie pulled her car over, and in her very kind, helpful way, was able to convince Jim to get in her car so that he could "go see Carole". I approached the car, and he became quite upset, obviously not recognizing me as Carole.

Too many details to go into here, but by the end of the day, Jim was safe, back at home with me, and relatively calm.

I learned something here. If Jim ever does this again, I will make one attempt to gently encourage him to not leave. If it doesn't work, then I will call 911. It likely will result in a visit to the ER, but this might bring a hospital admission to help stabilize Jim and make adjustments to his medications.  My futile attempts to follow him did nothing more that aggravate him. He had no idea who I was. Lesson learned.

What is amazing, is that he walked about 3/4 of a mile! It shows you what adrenalin can do.

I've ordered some alarms for the doors to be used at night. As I have mentioned, I'm a pretty sound sleeper. This alarm will sound in our bedroom only, and will be activated when an exterior door is opened. I then would follow through with one friendly attempt to ask him to stay, and then if that fails call 911.

I've had some suggestions from well-meaning friends about an extra lock that keeps someone in and can only be opened by a special key (to be held by me). But this would only accelerate the situation if Jim thought he was trapped inside our home and would worsen his agitation. The other suggestion I have had is to be ready to use some physical self-defense moves. Again, I see this as aggravating the situation. Plus, I just don't have that kind of response in me. Not enough testosterone in me! I'm all about escaping from the situation should it become dangerous.

Other precautions I have taken: cell phone and car key are in my pockets at all time, ready for a quick escape or making an emergency phone call.

Lately there have been no daytime naps, so it has been impossible to make private phone calls. My dear friend Jabberwalky made some phone calls on my behalf. I've got a good lead on a local agency that provides home care with no minimum hours required. I have a friend coming over next week to stay with Jim while I go off for a bit to make a few phone calls.

Jim's brother has been willing to come in every other weekend. This will give me a little bit of time to myself on Friday afternoon, and again on Saturday. Jim does not seem to notice or miss me when I am gone, so that is good. Jim's brother still not totally comfortable being left alone with Jim for too long, so I limit my time away to a couple of hours. He also is not quite as attentive as I am, but I think he is starting to understand how important it is to not let him out of sight.

I want to mention to my fellow bloggers that I'm sorry I haven't been able to read/comment as much as I usually do. It has been pretty intense, but I think things are starting to settle down so that I can resume my usual blogging and visiting my friends in the blogosphere world.

Thanks for stopping by. I so appreciate each one of you.

30 comments:

Sharon said...

Holy cow! Is this new medicine good for him or not? Jim seems to be progressing faster now. I wouldn't want for you to get hurt! You may want to get some window alarms. It would appear that each patient with Alz has their own take on what they do, you never know how he will react. My sympathies. I worry a little about myself, what kind of hell raiser I could be, scary. Does he have many lucid stretches lately? Sigh ... I truly wish I could help.
Hang in there, Carole!
Hugs!

Carole said...

Hi Sharon. I do think the new medicine will help (actually there are 2 new medicines). But Jim wasn't getting the benefit of the one pill, due to me not knowing that it had to be taken with a significant amount of food.

I also have a pretty pragmatic outlook on all of this, knowing that I can't protect him from every possible bad thing that could happen.

He actually had a good day yesterday, and today is looking like a winner too. So I think the new medication is starting to work properly, now that it is being taken with food and being absorbed. I also feel like I've taken the proper steps to protect myself.

You're so sweet Sharon. Thanks for your concern and hugs. Your's (and other's) kind comments are a huge support to me and mean a lot.

Marty said...

I have little to offer here, other than to tell you that I'm sure there are others like me who hope the best for you and are glad to to know that for the moment at least, things are settling a bit.

Anonymous said...

Such a struggle. It was be wearing on you. I would have lost my mind by now if I had to deal with what you are dealing with. I remember when our daughter was a toddler with a mind of her own and we weren't very good at communicating with her. Those days wore me to a frazzle. Your descriptions remind me of those days.

Carole said...

Hi Marty. Thanks for your encouragement. I'm also seeking some help for myself, as I know that if I don't take care of myself, I'm of no help for Jim. I'll share a little more in a future post. Thanks for stopping by.

Carole said...

Yes! Actually the decline in folks with Alzheimer's is developmentally the reverse of what babies/children/teens go through. Jim's behavior is very similar to a toddler. No ability for perspective taking, "no" to everything, etc. Thanks for your comment Dkzody.

Arkansas Patti said...

Jim's behavior may be toddler like but he has the strength of a man. I so worry about both of your safety. I can't begin to imagine the stress you must be under. I have a niece in a similar state and her husband has to lock her in for her own safety. Hope some more good days are coming and that agency can get you some help.

Carole said...

Hi Patti. The one surprising development is that Jim did not seem to notice when I left the house and was gone for a couple of hours. His brother said he never asked where I was. I'm going to use that to my benefit for bringing in outside help. He so frequently hallucinates (almost always of others being present) that I'm guessing he won't mind/object to caregivers being here. The caregiver will just be a part of the menagerie of people he thinks are in our house.

I won't put myself in danger. I see the warning signs and know when to go into hyper-attentive mode, give him space, be ready to leave etc. If he every physically harmed me, I just don't see how I could continue to care for him at home. So i'm very motivated to keeping myself safe. And, I have no qualms at all about leaving him alone in the house if I need to leave in order to keep myself safe and to go get help.

I'm sorry to hear about your niece. All of this must hit close to home. Thanks for your comment Patti.

Anonymous said...

People unknowingly hear of a prob and think 'oh they need a solution'. Think again. Knowing you're a bright lady who does her research you'd have thought of the solution by now. Unfortunately with dementia there are not that many solutions short of long term placement OR care giving, all which costs so much money. God bless you -N

Carole said...

Hi N. I know that folks are just trying to be helpful. But you are absolutely right; sometimes there are no good solutions to problems. Dementia certainly falls into that category.

Dr. S. does believe that the behaviors can be controlled with the proper medications. Jim's case has been complex. And with each medication change/adjustment it takes time to see if it's going to have the desired effect. No easy answers.

Thanks for your thoughtful and kind comment N.

Mary said...

This is just terrible for you both! I can't imagine what you go through. You will have to do the ER thing and it would be for his own good and yours as well. He must get regulated somehow on his meds or his time still being able to live in his own home will be much shortened and I know you don't want that. You have already done so much, so don't beat yourself up over what you may ultimately have to do. You have already done more than I would have been able to do...even for love. Please take care of yourself

DJan said...

When I saw the title of this post, I thought maybe it was dementia that had taken a long walk and Jim was better. But once I read it, I realized that is not the case. In fact, his cognitive abilities have declined significantly. When I see a new post, I drop everything and read it and the comments, hoping to find out how YOU are, Carole. It's so hard to believe that this sort of thing happens and we have so little help to deal with it. My heart goes out to you, and to Jim.

Carole said...

Hi Mary. Thanks for your words of encouragement. My plan is that if there is another upset, or if he tries to leave the house and doesn't respond to a single distraction/request from me, I will call 911.

It's so hard, the emotional turmoil, but I am getting some help for myself too. I know that it is just as important that I take care of me, so that I can care for Jim too.

Thanks so much for your kind words Mary.

Carole said...

Hi DJan. I was thinking about where Jim was at cognitively one year ago. The rapid changes and decline just take my breath away.

Yesterday was a good day. But nighttime found Jim to be very restless and not knowing who I was. It's the first time my sleep has been disturbed since all of this started.

My friend Mike comes over early next week so that I can make some calls to get some help pronto. Initially I thought a female caregiver might be the best, but now I'm leaning toward a man with a gentle approach, but able to handle difficulties as they come up.

This morning he did not know who I was and was certain he needed to go home. Stayed very calm myself, and with ice cream, cookies, lots of little distractions, he is still here. At this very moment he is talking to his brother on the phone. So hopefully today will turn out alright.

No perfect answer to this crazy world of dementia. Thanks for your kind words DJan. So appreciate it.

CW said...

Oh goodness, I wondered if something had happened to keep you from your computer. So very reassuring to see you in my inbox. I do worry for your safety as physical violence is part of the advanced state. Like you, I wouldn't be the type to be combative--better to do as you're doing (keeping car keys and phone on your person at all times). Sad state of affairs... here's hoping the new med will eventually put Jim into a calmer state of mind. You're in my thoughts and prayers...

Carole said...

Oh, thanks so much CW. It sounds like you know something about dementia. The doctor assures me that the behavior can be controlled with medication, but Jim is taking a bit longer to get just the right combination and dosage. In the meantime I'm making certain that I stay safe. I feel like I have enough warning when he starts to get really upset. So it affords me the opportunity to position myself for a fast, quick exit.

Thanks for stopping by. I appreciate your thoughts and prayers. I feel so fortunate to have so many blogosphere friends rooting for me. It really lifts my spirits.

Jabberwalky08 said...

Hey, Carole - here's rooting for you, just to join the throng of grateful followers...! The detail you are willing to put into your posts is so very helpful. It sounds like you are thinking about and doing all you can in this exceedingly fragile situation.
Take good care.

troutbirder said...

Thanks Carole for the link to finding a place to buy anti wandering devices. I know this will be need here someday. My mom was found wandering in outside a night in a Minnesota winter some years ago in here nightgown. That was the crossing the line moment for my younger brothers and me for requiring my father to agree to here placement in a nursing home. I'm appalled at the lack of information on the new meds for Jim. Minnesota law required pharmicists to explain in detail new meds and provide written details. A year ago agitation and aggression was an increasing problem now that is a lot less although paranoia seems to have taken its place.
Hang in there now,
Troutbirder (Ray)

Carole said...

Hi Jabberwalky. Fragile is a good way to describe it. By nature I am a person who likes to be in control of my life. I guess dementia didn't get the message, as things sometimes seem so out of control. Thanks so much for your support. It helps to have a friend who really understands what this is all about.

Carole said...

Hi Ray. I wondered about the wandering, thinking that for sure the heat (or cold) of the day would certainly keep the person from leaving. Obviously not. I didn't realize your mom suffered from this cruel disease as well. It's just not fair. And I fear that as the baby boomer population ages, the systems in place (which are woefully inadequate) will be come overwhelmed with the intensity and demand for better services.

Paranoia is a tough issue! I'm constantly reminded that you can't reason with someone who is incapable of reasoning.

Thanks for commenting Ray. Always good to hear from you; it helps me to connect with others who are walking this journey. What is it they say?....The club that no one wants to join. Take care Ray.

Dr Sock said...

Carole, of all the really difficult things you have had to face this last two weeks, fear for your own safety has to be the worst. This on top of Jim's high level of agitation, leaving the house, reduced ability to recognize you, not napping, and disturbing your sleep. I am sorry that you have had to experience all this. It is heartbreaking.

Jude

EB Wagner said...

Carole, please don't take comfort if Jim has to go to the hospital. You, yourself almost need to be there 24-7 unless the staff is well trained in dealing with dementia patients. Thank god I had 5 siblings to take shifts to literally stay with my Dad, 24-7, while staying at the hospital. We did everything short of changing his diapers. They never checked in on him, it was very sad.....and scary!!! I know there are some hospitals that aren't like that, perhaps this was just at a bad time, but I would never feel safe leaving my father, who had dementia, alone at any time. The nursing home is a whole different story. (((HUGS))) to you my friend.

Carole said...

Hi Jude. Yes, it has been a rough couple of weeks. There are a few more developments, of which I will write about in a post in the near future. I never dreamed that this is where we would be at this point in our life. But I'm determined to make the best of it, and finding silver linings when I can. Thanks so much for your kind words Jude.

Carole said...

Hi E.B. Thanks for stopping by. You are correct that many times hospital admissions create additional problems for someone with dementia. The hospital that Jim's doctor recommends actually has a separate GEM care emergency room, and the hospital has staff who are trained in working with patients with dementia.

I agree with you that if you are present, there is a much better chance that your loved one will get better care. Sounds like you have had experience with your dad having dementia. So sorry to hear that.

Thanks for your thoughtful comment E.B.

Tehachap said...

Another week has passed and I wonder how you and Jim have fared. My husband has had several days of confusion this past week. Thankfully, he had a very lucid moment where I could talk to him about his mental condition. He knew he was (in his words) messed up but didn't realize (or even remember) what he was doing/saying. We checked his blood sugar one morning and it was 181--not good. When his blood sugar is really low, his mental state becomes confused and he's incoherent. Back to normal today... keeping my fingers and toes crossed. At least we had a moment to discuss the ramifications of the situation, if it happened again and didn't go away or if it became a really severe condition. Prayers for you and Jim, and hoping all is at least stable and safe. Hugs, Carol

Carole said...

Hi Carol. So good to hear from you. When your hubby had that episode of confusion, is it possible that his BP was too low? If you have a way of checking it at home, it might be worth doing if he has another episode of confusion. Low glucose and/or low BP can both bring on confusion. I only mention the BP because I remember you mentioning that his BP meds had to be cut back because his pressure was so low.

Jim and I are doing OK. Long story short, Jim had to be hospitalized for 6 days following a crisis at home. We are now both safe and sound, and I am working out what options are best for both of us. I hope to get another post up in the near future with more details.

Thanks for thinking of me, so sweet of you to check in. Take care Carol.

joared said...

You’re dealing with some exceedingly challenging situations. Hope meds stabilize him and options you’re pursuing work out to your satisfaction. No need to apologize for not visiting other blogs or commenting on them.

Carole said...

Hi Jo Ann. Thanks for stopping by. Yes, it has been quite a challenge. I didn't realize how exhausted/stressed I was until Jim was hospitalized. It gave me some much needed relief. Another post forthcoming in near future.

Tehachap said...

Sorry to learn that Jim had to be hospitalized, but it's a blessing in disguise. You can get some much needed rest and re-group your thoughts on how best to deal with things. Robert is better -- saw the Urologist on Thursday and he said to come back in 2 weeks; added an antibiotic to continue his already completed series that the hospital's medical dr. prescribed at Robert's discharge. No more serious mental lapses, thankfully. My niece was here over the weekend and said she was initially worried because he didn't seem to be all there, but the next day he was better. I think he's turned the corner on his recovery, though he can't climb stairs or drive long distances yet. Take care of yourself... I continue to keep you and Jim in my thoughts and prayers.

Carole said...

Hi Carol. I was just starting to organize my thoughts for a new post, and your comment came sailing in :-)

Sounds like you and Robert are facing some significant challenges right now with his health. Your niece's observation is interesting. Sometimes we are so in the thick of things that we can't really see how much things are changing. Glad Robert is doing better. Infection can definitely cause some confusion if the person is at all vulnerable. Take care Carol, and watch for a post later this evening with some updates.