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Old 12-13-2011, 12:00 PM   #1
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New doctor - new meds

Hey all -

So - with the help of my stepdad's main caregiver (who's also the owner of the adult family home), my stepdad now has a home doctor. Yay! Well, she's actually a nurse practitioner, but at this point that doesn't matter to me. She really seemed to know her stuff, was very attentive to my stepdad and to the feedback we were giving her.

We're going to try a new med - trazedone - for sleeping. He doesn't sleep at night. I'm truly grateful to the owners / caregivers as it means their sleep is disrupted most nights (they don't have a third shift person per se - they live upstairs and so - they're basically the third shift). He often sleeps during the day and it can really be a problem......of getting him to take his meds.....to eat.....and for us to visit.

If the trazedone doesn't work, the nurse practitioner recommended risperdal. He also can have agitation and exit seeking from time to time, but we all agreed to try the trazedone first. As these are both new meds to me, just wondered if you all had experience with them and what your experiences have been?

I'm very hopeful that this home care will work out. I really haven't been all that happy with the care he's been getting from the internist, and it's gotten so difficult to transfer him, wait at the clinic, blah blah blah. I knew this woman was for me when she said at the end of her visit that her goal was to keep her patients OUT OF THE ER unless absolutely necessary!! Yay!!

She has worked for 8 years as a nurse practitioner and has worked quite a bit with the geriatric population, and it shows. So - keeping my fingers crossed. Will see if the trazedone is effective over these next two weeks (she recommended we give it two weeks).

As for my "bio-dad" - he had a followup with his pulmonologist and he currently has 87% lung capacity. They started him on a medication (I'm not sure what at this point) and want to see him in 6 months for a followup. He sounded very upbeat when I talked to him after the doctor appointment, so I was glad for that.

Have to say - I am keeping an eye on my mom.....{{{sigh}}}......I'm seeing more trouble with her short term memory......now that I've walked down "dementia road" it's difficult to ignore certain signs. I'm not saying she's there.....yet......but I'm seeing some changes these past couple of months. UGH.........talk about needing to take things one day at a time. Sometimes it feels more like one hour at a time............

 
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Old 12-13-2011, 11:08 PM   #2
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Re: New doctor - new meds

I think you found a good one TC There is nothing wrong with a Nurse Practitioner. She seems to be in tune with your Step dad and you which is what you need. As for the Trazedone... that is a good one! I know of many cases where it was used successfully. (The ED at the facility I worked for always recommends it!) Dad was on the Resperdol for a while. Those are two very different types of medication.

If the Trazedone doesn't work after 2 weeks you might suggest Melatonin along with it. Trazedone is actually an antidepressant. The waking at night and sleeping during the day could be a lack of the natural Melatonin that we all have. Mom, even on her anti psychotics and anti depressants still did not sleep at night. She was calmer and didn't try to run away but she was still up most of the night. Once i started the Melatonin.. she is sleeping at night again

I am glad your Dad is doing as well as he is doing and I do hope it continues for a long while... and you have time to reconnect with him and create new memories as well.

As for Mom.... just be watchful. The next time you have her at the doctor ask for a MMSE. At least you will have a bench mark to go forward with. I know the feeling... OH NO, not again!!! But hang in there. Good things are happening now. The longer we are in this crazy situation the better equipped we are to handle whatever life throws our way. After Dad, FIL, MIL, and now Mom... if I get through this, I can get through anything!!!!

Love, deb

 
Old 12-14-2011, 09:35 AM   #3
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Re: New doctor - new meds

Thanks Deb!! I really appreciate your feedback regarding the new nurse practitioner and the new meds! I will mention the melatonin. I'm so glad it's working for your mom. Funny - we're grateful for the little things aren't we? Like when they sleep through the night!!?? Although, in the scheme of things, it's not just a little thing.

It's amazing what you've been through Deb......I know, I know.....you've reminded me before you really ARE human , but when I think of your journey, and how you manage it all, and are so active on this board and so giving of your time and support. Well, you're a very special person to me. Just wanted you to know Sending you extra bigs {{{hugs}}} today!!!

 
Old 12-14-2011, 10:20 AM   #4
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Re: New doctor - new meds

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Originally Posted by TC08 View Post
Thanks Deb!! I really appreciate your feedback regarding the new nurse practitioner and the new meds! I will mention the melatonin. I'm so glad it's working for your mom. Funny - we're grateful for the little things aren't we? Like when they sleep through the night!!?? Although, in the scheme of things, it's not just a little thing.

It's amazing what you've been through Deb......I know, I know.....you've reminded me before you really ARE human , but when I think of your journey, and how you manage it all, and are so active on this board and so giving of your time and support. Well, you're a very special person to me. Just wanted you to know Sending you extra bigs {{{hugs}}} today!!!
I second that.... can't thank you enough...
judy

 
Old 12-14-2011, 10:26 AM   #5
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Re: New doctor - new meds

Deb ROCKS doesn't she Judy?? Let's all do a HAPPY DANCE for DEB!!!!!

 
Old 12-14-2011, 08:58 PM   #6
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Re: New doctor - new meds

Thank you for allowing me to share what I have learned. It is what validates and makes it all make sense to me

Love, deb

 
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Old 12-21-2011, 02:00 PM   #7
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Re: New doctor - new meds

{{{{sigh}}}}.........well, my stepdad has taken a turn for the worse......don't know if it's due to a small stroke, or just another slippery slide down dementiaville...........talked to the nurse practitioner (got her onboard just in time), and she gave us a choice of 1) ER......CT scan, blah blah OR 2) hospice. We all are voting for hospice.

I've been out of town a few days, so haven't seen my stepdad awake yet (he's been sleeping alot and was fast asleep when I stopped by to see him yesterday). His caregiver tells me he can no longer "bear weight" {{{sob}}}, can't help them at all with transfers........leaning to the right more (this has been an issue for nearly 3 years, but it's worse now). Fortunately they have some lift-type-contraption that they can utilize to transfer him. I haven't seen him in it yet.......I'm sure that's not going to be easy to see. My mom has and it really upset her.

Gees - maybe this post should be back on my "I Hate This Disease" thread. So - it's into new territory of hospice. I've heard nothing but good things about hospice, but was awake half the night thinking about it.

Any good words - encouragement - towels - I will take them. I will meet with the hospice nurse Friday at 1:00. The day before Christmas Eve. I'm trying to finish up Christmas stuff but frankly, could care less. I'm just thinking about my stepdad......and my mom.......and how I'm going to manage my way through this.

I know it doesn't mean the end is imminent, and I imagine once we have hospice on board we will all give a sigh of relief. Right now I'm just anticipating, and feeling, well, sad I guess. This really is a dreadful disease....................

 
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Old 12-21-2011, 05:06 PM   #8
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Re: New doctor - new meds

It is the newness and the shock of this new downward turn. Once the decision has been made and the Hospice team is in place they will guide you through this maze of the unknown. I don't know what I would do without my wonderful Hospice nurse and social worker. They both visit with Mom regularly and give me professional updates, as well as answer any questions. Beyond that they are truly concerned about me which is a breath of fresh air. Suddenly I felt like I was not carrying the entire burden for all those unanswered questions. I get up Tuesday morning looking forward to my half hour with the social worker We were 20 minutes into the conversation this week before Mom was mentioned.

We are all so determined that we tend to forget ourselves. We get to the point we don't expect or look for help. In fact we all need uplifting. This is the best part of Hospice. Unlike other doctors, nurses, caregivers, and other medical professionals, the family is as important as the patient. So all those questions you are staying awake asking yourself... just hold on because help is on the way You will manage your way through this phase with a full team beside you!

But until Friday I am backing up a truck load of towels and many hugs. It is ok to feel sad. Just keep it in perspective knowing help is on the way.... and know we are all here for you

Love, deb

 
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Old 12-21-2011, 06:51 PM   #9
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Re: New doctor - new meds

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We are all so determined that we tend to forget ourselves. We get to the point we don't expect or look for help. In fact we all need uplifting. This is the best part of Hospice. Unlike other doctors, nurses, caregivers, and other medical professionals, the family is as important as the patient. So all those questions you are staying awake asking yourself... just hold on because help is on the way You will manage your way through this phase with a full team beside you!
Thanks Deb. Thank you so much. I will welcome the support with open arms. I had to put part of your post in bold as that is me at this point in time. This journey can feel so incredibly lonely, although I know you're all just a **click** away on my computer!! And, I am aware that millions of other families are experiencing the same things I am........yet, I can feel incredibly a-l-o-n-e.............

I do know that, as the new year gets underway, I am going to need to make some changes in how I am managing all of this with my family. It's such a huge load to carry, and I'm going on year FOUR. Maybe getting hospice on board is JUST what I need............

 
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Old 12-21-2011, 08:24 PM   #10
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Re: New doctor - new meds

I know what you are going through as I am going though something quit similar... GOD I HATE THIS DISEASE.... I think this is harder on us then it is on our loved ones, at least I am willing to carry that thought, Deb is the best. hugs to you and big thank you to deb......

 
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Old 12-21-2011, 08:55 PM   #11
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Re: New doctor - new meds

Thanks Jags for the kind thoughts. We all have to stick together! Only those of us who are walking this road understand it. Yes - at this point I agree - it's harder on **us** than on them.........big {{{hugs}}}!!!

 
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Old 12-22-2011, 08:58 AM   #12
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Re: New doctor - new meds

It does seem to be a lonely journey even through there are so many others going through it and there is help out there. We just need to know when and how to grab that help. But in the end the decisions are ours to make and that is what makes it a lonely journey. The wonderful thing about Hospice is that they have the expertise and desire to help you make those difficult decisions.

I totally agree that this disease is more difficult on the care givers than the loved one with the disease!!! If you get their emotional well being balanced they stay in the moment of contentment without all the stress and worries of the past and future that we have. That is why I say so often, take a lesson from your loved one and stay in the moment as much as possible. Find the best there is and hang on to it. Deal with what needs to be done and then leave it in the past. We can't carry all that this disease gives us alone unless we take it a day at the time leaving what has been in the past and what will be in the future

TC, just remember that help is on the way .... and yep we are always right here for you!

Love, deb

 
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Old 12-22-2011, 10:50 AM   #13
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Re: New doctor - new meds

Thanks Deb. Yes, it's true. That IS why it feels lonely. Because we do ultimately have to make these decisions ourselves. My mom and stepdad definitely chose the right daughter when they named me to be their durable powers of attorney, but I take my role very seriously, and it can feel like such a huge load to bear. I do wish sometimes I were the **backup** instead of the one on the front line.

My stepdad has really been out of it for several days now. The caregiver has to wake him up and feed him his meals. He's eating which is good, but still......I am sleeping like crap, so I sleep in.......which makes it hard to start the day, and there's still Christmas stuff to do too!!??

I wish the hospice meeting were today. I'm feeling very impatient. Then I have to remind myself about all the other times, through this dementia journey, through my own cancer journey, that I've had to **wait** - for a doctor's report, an appointment, etc.

The best thing I can do today is get the Christmas stuff taken care of. Tomorrow will come and I will get to meet with the hospice nurse. My boyfriend is back in town for the holiday. I know I haven't said much about him on here. We've had a bumpy year. He's been away for some training but is back for Christmas and New Years. I'm not sure if that's a good or a bad thing (!!), but he's trying to be supportive, although he doesn't seem to have a clue how to do that.

Anyway, I'll definitely let you all know how the meeting goes tomorrow. Thanks for listening........

 
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Old 12-22-2011, 07:16 PM   #14
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Re: New doctor - new meds

I'm listening and you know it We say we would like to be the "back up" but if we were we would be in the forefront anyway because that is what kind of people we are. The 18 months Mom and Dad were not here... I was right in the mix! Even now I try to share the load, or at least the knowledge that leads to the decisions, but it still falls on my shoulders. See, some of us are just made that way. Your Mom and Step Dad knew what they were doing. Yes, the load can seem heavy but we can carry it!! That is what they knew which is a compliment. And we are and will do it!

I do hope all goes well tomorrow and please let us know how it goes. Help is on the way. Use them!! Ask that the nurse and social worker visit on different days. Ask for a care staff to help him one day a week. Ask for a volunteer to visit with him if possible. Get as many days as you can because those days when Hospice is there and reporting back to you, you will feel more comfortable staying at home and living your life

Some don't know how to be supportive, especially those that don't understand what you are going through. That doesn't give the boyfriend a get out of jail free card but it is an explanation. At least he is trying. Perhaps you should tell him what he needs to do? Some learn and some don't. I live with one that doesn't get it but he knows not to make any comments about the amount of time it takes! He has learned to put up with the take out and thrown together suppers or fending for himself. We can't ask others to do what they are incapable of doing All we can do is try to teach them, accept what they can do, or let them go until we don't need that any more!

Hang in there

Love, deb

 
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Old 12-23-2011, 05:47 AM   #15
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Re: New doctor - new meds

sending good vibs for your meeting today..... hugs to you...

lov judy

 
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