Well Wishes to JustMike

a reply to: Doodle19815
Thank you, Doodle. I'm glad for the thoughts and prayers.

Just a little update. I have taken myself off one of my meds. It's an anti-spasmodic, which basically does the same thing as the Timonil (Tegretol) that I've been on for years. It was prescribed by a doc in the hospital, so I've only been on it a few days. However it was giving me issues with nausea and vomiting so I've disconinued it and am now feeling a lot better than when I was on it.

I suspect the hospital doc simply wasn't aware I was on the Timonil. But the new one in conjunction with it can react badly with the opiates I have prescribed and give rise to the sort of side effects I've been getting.

Normally, they advise patients do not take themselves off medication without checking with a doctor first, but as I was losing most of what I took within half an hour, (plus the pain meds, which makes me feel even worse), it's no point taking it anyway. Naturally I'll discuss this with my doc tomorrow and we can review the situation.

Thank You for the update Mike.

It sounds like you are staying focused. Hugs to Dada and You.

a reply to: WalkInSilence
Thank you, WIS.

Now for an unexpected update. My doc let me know this morning that the Long-Term-Illness Care Facility (LDN in local lingo) has a place available sooner than planned: Dada can go in there today. My Doc recommends I let her go in now, instead of waiting for the original planned admission date next Monday Nov 12, because in his opinion I'm worn ragged and this is not good for my own medical progress.

And it's true: I am absolutely exhausted. Looking after her all day every day is just getting harder and harder. It would be tough anyway, even if I were in good health and fully mobile, but as I am now it's physically devastating and mentally very debilitating as well.

So, I'm home now after my morning infusion and have packed a few items Dada will need in the first few days; I can take her some more in the coming days depending on what else we discover could be helpful and assuming the exta itemsare allowed.

It's a relief, but at the same time I feel awful about it. It's going to be so strange to be here alone and I don't expect to sleep much tonight. But the doc has impressed on me that I really need to rest so my condition doesn't worsen, otherwise I could find myself being rushed in for an urgent operation.

So, the day I've dreaded has finally arrived: she is going into a care home, at least until I've had my operations and recovered. I just hope it will be possible to bring her home again.

a reply to: JustMike

Oh Mike, I have no words. It is so hard when "what is best" tears our life apart and breaks our heart. May you be given courage. Hugs from afar.

a reply to: JustMike

I'm crying with you Mike. Emotions are like a roller coaster and can take its toll on you. Please look after yourself as best you can. I know it's hard as hell. Please know how much we love and appreciate you. Dada is in good hands and when you are doing better, you can visit more often. You can give her a big hug for me next time you see her.

a reply to: WalkInSilence and also a reply to: Night Star
It's okay, WIS and Raine. Thankfully I have an amazing doctor and he has been doing all he can to care for both of us.

Dada's now in a safe place and I am very happy with what I saw there. The staff are great, the place is very clean and well maintained and there is just a good "vibe" there overall. Dada settled in right away and I'm sure she's sleeping soundly now.

I'm not because it's just very hard to adapt to being on my own. It's also been three years or more since I last had a whole 24 hours when I didn't have to actually do anything. Even when I was in hospital the other weekend, Dada was there too and I was still expected to keep an eye on her.

So, "resting" completely is something I'm just not used to any more and it'll take a while to take on board this feeling of having free time and truly being able to rest. But it was the right decision and in the long run, it was the only safe way to go -- for both of us.

a reply to: JustMike

It was indeed the right decision for you both Mike. Besides resting, I hope you are eating well enough.

a reply to: Night Star
Hi Raine,

I just "graze" and eat whatever and whenever. I'm not a big eater anyway, but as I don't have to plan meals around what my wife is able to eat on a given day, I just don't worry about fixing "regular" meal times and so on. Not for now, anyway. Still need to get into a new routine.

Once I finally got to sleep sometime after 3 am, I slept like a log. Had two cats in the room and they slept on Dada's bed. When I finally woke up it was 11.30 am! I was much more tired than I'd realized.

Just out of habit the first thing I did was look across to Dada's bed. As I was still not fully awake, I was expecting her to be lying there. Then as I saw the two cats, all stretched out and dozing happily, I remembered, and yes, I felt myself relax a little: I didn't have to feel guilty about sleeping so late.

a reply to: JustMike

Hi Mike it sounds like you will get the rest you need now so you can be strong for the surgery. I am happy to hear this.
Will you be able to visit Dada?

a reply to: JustMike

Wow. 3 years is a long time without a break Mike. I think you earned that sleep-in! Dada will be well cared for and you get the rest you need in preparation for your operation and recovery. I'm sure it's weird being without Dada but I'm also sure it's best for both of you right now.

a reply to: WalkInSilence
Thank you, WIS. I'm feeling the difference already. I'm not constantly tensed as if I'm on watch. Now that she's not here I can see that was what I was doing -- because I had to be ready for almost anything at any time.

And yes, visiting her is no problem. The LDN she's in does not even have set visiting hours; their philosophy is that it's better for the patients and their families and friends if people are free to visit at any reasonable daytime hour. If anyone wishes to visit in the evenings, that's also okay but they request we phone first so they know about it.

The only restriction is that if a person comes to visit and the one they want to see is engaged in some activity like rehab, or eg is half-way through having a shower or bath, then the visitor just takes a seat and waits until the person is available.

I don't plan to visit every day, at least early on. I consulted with staff on this and they agreed.

The reasoning is many-fold, but the main factors are that Dada has virtually no short-term memory at all, and lately can only rarely focus long enough to have even a brief conversation with anyone. And in the first week or so, she has to settle into a new routine in a new location and this will mean more confusion for her, at least to begin with.

So, the first few visits I make will be just to see how she's getting on, give her some hugs and maybe take her for little walks in the grounds if the weather permits and she's feeling up to it. Otherwise I'll mainly be consulting with the staff on her progress and treatment.

The problem is that visits can actually be disruptive. I am well aware of this from the last time she had to be in a care facility. Every time I visited, she cried and wanted to come home with me. This place is far, far better than that one was -- the whole vibe is different -- but she is also much more afflicted by her disease now and has even less contact with reality.

My concern is that my visits shouldn't negatively affect her too much. I will need to consult with staff if there are any signs of her being distressed and figure out with them what's the best way to proceed.

I am hoping she can come home again asap after I've recovered from my surgery, so I need to maintain reasonable contact with her so she won't forget who I am. But that's still some weeks off. Meanwhile we'll proceed slowly and with care. "First, do no harm," is the best rule to go by.

a reply to: JustMike

Glad to hear you got some well earned rest Mike, it sounds like it was way overdue !

I hope Dada is happier in this new ( to you both ) facility, it must be reassuring to know the staff are friendly and flexible.

Thanks for the update Mike.

Onward and upward !

a reply to: JustMike

I'm not constantly tensed as if I'm on watch. Now that she's not here I can see that was what I was doing -- because I had to be ready for almost anything at any time.

Man, that really hit home with me. That was me with my elderly Parents when they were alive and my Husband from time to time. I never knew who would have the next emergency or at what time and how bad things would be. I was always jumping every time the phone rang no matter what time of day or night, running down stairs, spending hours on end at hospitals, even when I was working full time. For years! So yes, I understand how tense you must have been all that time.

I am glad you are finally getting the rest you need. I am also glad that Dada is in good hands.

I'll keep checking in here for your updates. As always, much love to you and Dada.

a reply to: JustMike

It sounds like Dada is in a good place that truly understands the needs of people with this affliction. It puts much more strain on the relatives than the actual patient because we want to maintain a sense of reality.
I applaud you if you can fallow their lead. Most people can't.
Dad deteriorated rapidly, but fortunatly I had engaged with this condition before, so I knew what I was in for. Sinse then I have delved into the evolution of care for these people. It is heart warming to see how it has evolved, the compassion, the need to be in the moment.

I am convinced Dada will recognize you, their long term memory is intact. You are inprinted in her heart and on her soul.
Get your rest and rest well.

Here's an update, mainly about Dada. I'm about the same, so not much to report from my side. Hopefully there won't be until I've had my op. For the next 2 weeks I'm just on supportive care via my local doc.

The following is mainly cobbled together from bits and pieces I've already written elsewhere on ATS in the past couple of days. As not everyone can read everything on this site I've done a condensed version of those posts and added in a little extra for perspective.

Dada got transferred to a regional psychiatric hospital on Thurs morning. They don't have the specialists to treat her at the local LDN (long-term medical care center) as she is so advanced in her disease, so they sent her over there for care. She can be transferred back to the local place when she's more stable.

Unfortunately it's almost impossible for me to visit her at the new place because it's in the city of Jihlava, about 30 km away; right now I can't drive that far or suffer the rides and transfers on public transport for that distance.

For the first few days there would be no benefit in seeing her anyway, because they need to titrate her new medications. “Titrate” means “individually adjust dosage/s” and that's best done with as few outside distractions as possible.

I'm just so sorry for her, but she was getting pretty bad even at home. Changing settings apparently made her worse, but this is quite typical for people with her disease and not all that unexpected. She seemed okay when I visited her on Wed, but the doc told me Thurs morning that after I left she just wouldn't settle down again.

The only way they could have kept her in the LDN would be to dope her up to the eyeballs and that is just not humane. It was way better to get her into a true hospital setting, where they have all the specialists and facilities required to help her as much as possible.

So, although it was upsetting that she only managed two days in the LDN, this change is ultimately going to be better for her.

I went to my doc's Friday morning for my Mon-Fri opiate IV ritual. While I was there the sister called through to the hospital where Dada is and had a chat with the head of the dept. she's in. The head doctor now knows why I can't just jump in the car and drive over there to visit. Part of their methodology is to involve family members in the whole process – which is very encouraging – and the doctor expressed her concern that we find ways to keep me in the loop as much as possible.

This new place in Jihlava is much more in line with 21st-century thinking: their ultimate goal is to get patients mentally stable enough to either go home again, or into a more “normal” aged residential care place if they have no-one at home to care for them.

So, we've set up lines of communication between the treating doctors and myself – and also with her son.

Meanwhile they are working on assessing her to provide the best possible balance between necessary medication while still giving her a chance to live as an individual and not just be an over-drugged zombie.

It's going to take time. I would guess several weeks, at least. They need to get her calmed down enough to communicate with her, then slowly adjust her doses to provide that ideal balance.

Besides the medication they will also be using physical and intellectual therapy techniques so she stays in good shape, while having opportunities to use whatever abilities her brain still has available. Things like doing puzzles, handicrafts, and even dancing – within the limits of the individual patients, as they point out on their website.

So, that's all for now. I'll let you know how she's getting on when I have more news worth passing on. And hopefully, there won't be much to report from my side of things either for the next couple of weeks.

a reply to: JustMike

Thank you Mike for the update!

It looks like Dada is in good hands and they will take good care of her and do their very best working with her.

We are all here for you Hunny! You are both as always in my thoughts and prayers.

a reply to: Night Star


What Night said.
I can imagine though that you are a little restless. Haveing been so active and had that enormous responsibility, it must now seem empty all though it is a relief.
It is a coping proccess for you too, give your self your well deserved rest.

a reply to: JustMike
Hi everyone,

I'm replying to my own post so folks can refer back to it easily if they wish to.

Dada's been in the Jihlava Psych. Hospital for a week now.(See linked post for details of why she's there etc.) Yesterday my Doc called there on my behalf and at my request; docs are better & quicker at talking to one another as they know the same jargon.

Dada took a couple of days to settle in, but the doc who has been looking after her day to day said she's doing pretty well now. She's calmed down a lot and seems in good spirits. The doc said that Dada basically talks non-stop!

This is a actually a good sign because that's the way she behaves when she's pretty happy. Best thing is, she's not wandering around aimlessly with her head down and crying all day long, which is what she did in the last place she was in a couple of years back. That was just horrible. In that other place, they kept her doped up to the eyeballs so she was "cooperative" and naturally, she felt like death warmed over. No wonder she cried all day and just wanted to go home.

This place is treating her much more gently and compassionately. So, all things considered she doing ok and that is a huge weight off my mind.

Things are not going so great for me. I woke up feeling extremely nauseous this morning and just managed to rush to the kitchen sink in time. (No way I would've made it to the bathroom.) That was a couple of hours ago and I'm still not feeling very good, so I'll talk to my doc about it when I go in for my daily IV and consultation later this morning.

I've had episodes of nausea and vomiting a few times already. Generally speaking it's because these are very strong drugs and we are right on the limit of what can be used outside a hospital setting. It takes a very experienced and correctly qualified doc just to administer some of these drugs but mine has the needed training and experience. But for all that, sometimes my body is just not having such a good day and simply can't manage it.

I expect he'll consider reviewing my various meds and doses. Either reduce doses or perhaps eliminate/change one or two. He could also reduce or modify what I get in the morning IV. It's a very tricky balancing act and I must admit he's done wonderfully well. I have way less serious pain than I had just a few weeks ago but now the nausea is really becoming an issue. He'll doubtless be concerned that I don't run into problems with malnourisment or even dehydration. On days like this I sometimes struggle to keep down half a glass of plain water.

Anyway, we'll get it figured out. Only 10 days to go til my op, so that's a positive!

And, if things just get too much for me with all of this, there'll be no problem to get me admitted early, where they can then use the full range of hospital-based pain relief and dietary supplements they have available. I'd rather not do that. I mean, who actually enjoys lying around in a hospital bed? But we'll see.

a reply to: JustMike

Hang in there Mike.

It sounds like Dada is in a good place, with good medical attention. That must be a load off !

All the more reason for you to not over-do things.

Take it easy Mike ... we are always here with friendly ears !

😊

a reply to: Timely
Thanks, mate.

Having this outlet and support really helps. It's not an ideal way for everyone, but it works for me, anyway.