feeling overwhelmed (very long read)

[jenn_rn_nj]

hello - this was posted in the pre-nursing student forum, since I am a student but I'm posting here since this aspect of nursing is applicable to my dad's situation...any advice or ideas are appreciated and thank you in advance for reading. :) My dad's bleed was in his temporal lobe (specifically the thalamus, right side and spread into his occipital lobe - it was very large).

copy & paste:

hello...

This is a long post, but I'm feeling very stressed and overwhelmed and perhaps someone has been in a similar situation and can offer some advice - I'm about at my wits end. Also thinking of posting this in a neuro section or ICU section in the nursing boards for other input...anyway, here goes.

My dad had a hemmorhagic stroke last week (he's only 56) due to an AVM (arterio venus malformation - congenital problem where an arteriole goes directly into a veinule instead of through a capillary first - it happened to be in his brain - he could have more, not sure...he could have another stroke, not sure). He had emergency surgery to evacuate the blood and repair the vessel - he was in the ICU for about a week and is currently on the floor and will either be coming home this weekend or perhaps going to rehab, not sure yet.

My dad also has early onset Alzheimer's disease (most likely - definitive diagnosis cannot be made until autopsy...my family is in a longitudinal study with the Univ of Indiana - many confirmed cases of AD in our family and my dad is the 4th or 5th generation so most likely that is what it is, though). At this point, it is early in the disease so his main symptoms are forgetfulness, losing things frequently and word finding difficulties. The stroke and the AD are unrelated.

My dad has come through the ordeal so far with very good physical function. He does now have an impaired visual field so he can not drive anymore - he was having trouble with his legs buckling today so now they may send him to rehab but that is uncertain - we may know more tomorrow.

His main problem is in cognitive function...he is so very, very, very confused. Nobody knows if he will regain his "normal" function - it's almost like this stroke pushed the AD back like 5 years or something (having gone through this with aunts/uncles and my grandmother and having a former job as a psychometrist, I'm pretty familiar with AD and it's progression). At this point, my dad cannot be home alone. As I stated before, my dad is 56 and my mom is 54 - my dad was on long term disability (he was no longer able to perform his job as a research chemist with his short term memory problems) and my mom was not planning on retiring until 60.

Everything is very unknown right now, but at the same time my mom and I are trying to make plans...we have to deal with this somehow and we need some sort of plan so that he does not hurt or endanger himself. We have looked into an aid, adult day cares - things like that (it's very tough to think of adult day care for a man who is 56 and who is also very smart and has an incredible long-term memory - he was telling the nurses at the hospital all about the drugs he was receiving in ICU - they were amazed) -...we don't want to demean him in any way.

My parents have saved well their entire life, they have money to pay for care, thank goodness, but at the same time there is a finite amount of money and the type of care my dad needs could easily deplete their funds in a matter of 5-10 years. My mom has a meeting with a lawyer next week to discuss estate planning and we also have to call their financial planner (one of the 50 million phone calls to make).

I know this is a lot of background...sorry for that. I currently live 1.5 hours away from my family. I work 40 hours/week and I am currently taking my last 2 pre-reqs for nursing school (micro & A&P II). I am accepted and should start nursing school this summer. My teachers all know what is going on - I am currently a 4.0 student and I wanted them to know what was up, not for special treatment, but just so they would understand why my grades might suddenly fall from high As to maybe Bs or Cs (egads, I can't think of that).

I just don't know what to do...I don't know what the extend of responsibility is to my family right now. I have tremendous guilt that I'm not there all the time. I want to help my mom but at the same time I have a house and school / work 1.5 hours away from them. I am visiting my family every chance I get at this point - I am a walking zombie - I fell asleep on the couch while studying tonight. I feel like I am being pulled in 50 directions...part of me thinks I should give up on nursing school maybe for a year but then part of me wants to keep going and stay the course...I've waited a long time for this.

I feel so selfish right now, but sometimes I think I could be more helpful to my parents as an RN both financially and with regard to knowledge base. I just don't know what to do or if there is a right answer. Also, so much is unknown right now - we may not know the full extent of the damange the stroke caused to my dad for months. I am slated to drop to 36 hours/week at work once nursing school starts but between my work schedule and clinical I don't even know that I will have a day off to physically go see my parents once nursing school starts.

My life and my family's life has been turned around and inside out by this...I have siblings but I am the oldest and both of them are a little on the irresponsible side at times. I know that ultimately I have to decide what to do since I am the one that has to live with my decision...I feel so sad right now and very uncertain about the future.

Thanks for "listening" and if you can think of any additional resources or ideas I'd appreciate it. We are currently working closely with a social worker at the hospital and with the Alzheimer's association for ideas, too.

[CrunchRN, ADN, RN]

I am so sorry. This os so awful for all of you. Your love for your family shines through. Make seeing a financial planner a priority. This is hugely important for all concerned. Could your mom manage your dad at home with the help of an aide a few times a week and maybe respite care or adult day care once or twice a week?

Please don't give up school. I am certain this would upset your dad more than anything else. He wants you to have a good future and that is very difficult to do without your education.

This situation may persist for a long time and you do need to live your life. What free time you can get you can go visit your parents and have fun with them. That will be so refreshing for them.

I so wish I could give you better advice as you and your family seem like such wonderful people. Please keep us updated.

[gwenith, BSN, RN]

I can't make the decisions for you but remember - even with the background of Alzhiemers there should be some improvement over the next 2 years. The Brain heals slowly.

As for confusion - there are ways of reducing it.

1) reduce stimuli - hard to do if he is still in hospital.

Confusion is exacerbated by multiple sensory input. So, if you are talking to him, one person at a time. Turn the TV/Radio off and let him focus on you. Short sentences that fit the attention span. Ensure that he has grasped that concept before moving on to the next concept.

You might also want to look into Early Cognitive Rehabilitation

http://www.cochrane.org/reviews/english/ab003260.html

Although the Cochrane study I have quoted above does not show statistical support for this there is some empirical evidence that it can help.

If he is not going to rehab (and it does sound like it might be a good idea) then look into some form of care situation, at least for the short term. Perhaps what YOU need to do is just take a couple of days to help sort things out. Talk to your Mother and see what SHE wants you to do as well.

[jenn_rn_nj]

Hello -

thank you for your words...my father came home this past Monday. right now he requires 24 hour care. my mom is going to continue to work (her respite) and my dad will go to a day program for AD patients; my mom will be his primary caregiver in the evenings and on weekends with help from me and my siblings.

my dad remains very confused and basically has zero short term memory. the doctors are uncertain at this point what his recovery will be. they are hopeful there will be some improvement but right now they are uncertain what problems are related to the stroke and what problems are related to the AD. only time will tell, i suppose. he had damage to portions of his parietal and occipital lobes and the most damage to his temporal lobe. he is showing a significant decrease in function with regard to processes related to those lobes.

i suspect the next few months will give us more information (we read that significant improvements usually occur during the 3 months immediately following a stroke, with changes occurring up to 18mos later). my family and i are really trying to work together to help mom so she does not get burned out and the woman who runs the day program dad will be attending has been tremendous with regard to ideas and feedback.

thanks again for your thoughts and words.

*much kudos to Christiana Care for everything (hospitalization, rehab & day program)*

[kcmo06]

I am very sorry to hear this i know that im kind of yound and im not a doctor but i do plan on being a CRNA in the future but i think you love your family alot and i know that since it is very hard to make a decision so my biggest suggestion would be that you pray about the situation and see what God would have you to do me personally would stay in school because from what i hear it seems like you have a lot of potential and you have a great chance of being succesful so i will continue to pray for you and your family. God bless you and your family