Home Health Services

[lieze]

I had inquired about home health care a couple weeks back. I am getting PT , OT, Speech therapy, a social worker is due to come out also. I have an aide that comes twice a week to help with my bath although that did not go well at all Friday. Even though I took a very short bath it triggered an episode that lasted for hours. Got so overheated after. But I am receiving services through Medicare for anyone that this might help. 

Requirements are being home bound for six months with extreme difficulty going places. Requiring assistive devices when going places etc. 

Obviously I do have Medicare but I believe these services are also available through Medicaid. 

They last for 4 weeks at which point you are re-evaluated. 

I just started last week. They do take vitals when they come out and record them. For my PT they want me standing at least 12 minutes and I can choose a task around home I want to get done for that 12 min.  Wow you know what I get to choose between 2 or 3 days a week for the PT. Right now I am 2 days but I’m just thinking if I chose 3 days and I am feeling up to it then I would have that oversight for an extra day. 

[Pistol]

@lieze - I receive home care services and also have medicare ( due to SSDI ). An RN comes once a week and as needed to access my port and start IV fluids. They would help me with other things too ( since I am home bound ) but at this point I do not need them ( I live with my husband and daughter and we manage ). I did have home PT once but it was useless. I could only stand 2 minutes or become symptomatic, so they had just do exercises lying down. They are valuable to do when I am bedridden, though. 

The good thing about homecare is that when I am in a flare and need help they come out, call my doctor for instructions and I do no longer have to go to the dreaded ER all of the time! It has been one year since getting IV fluids at home and I have not once been to ER or hospital!!! And - despite a few faints here and there - no seizures!! So I am very happy with the home care services in my case. 

[DizzyPopcorn]

18 minutes ago, Pistol said:

@lieze - I receive home care services and also have medicare ( due to SSDI ). An RN comes once a week and as needed to access my port and start IV fluids. They would help me with other things too ( since I am home bound ) but at this point I do not need them ( I live with my husband and daughter and we manage ). I did have home PT once but it was useless. I could only stand 2 minutes or become symptomatic, so they had just do exercises lying down. They are valuable to do when I am bedridden, though. 

The good thing about homecare is that when I am in a flare and need help they come out, call my doctor for instructions and I do no longer have to go to the dreaded ER all of the time! It has been one year since getting IV fluids at home and I have not once been to ER or hospital!!! And - despite a few faints here and there - no seizures!! So I am very happy with the home care services in my case. 

Pistol, you have my admiration. I do not know how you can cope with your situation. I would've given up a long time ago if i were you.

[Pistol]

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do.  We really can live with anything if we put our mind to it and have a support system around us. 

[DizzyPopcorn]

1 minute ago, Pistol said:

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do.  We really can live with anything if we put our mind to it and have a support system around us. 

Do you not have anger? About the unfairness of your illness? I've been getting really angry the past few weeks and i just want to punch a hole in a wall or something (figuratively of course, i wouldn't do that). I want my old self back. I did nothing to deserve this, nor (from what i can tell here on the forums) you either. Im pretty sure you were (and still are) a great mom and everyone around you loved your companionship. So why is it that i was cursed with this mess of a illness? What about you? Surely you do not deserve this.

h***, i never did drugs. I do not drink alcohol nor smoke. Im just frustrated with this thing. It doesn't make sense.

 

[Scout]

26 minutes ago, Pistol said:

@whoami - I did give up. When I became disabled nd realized that there is no cure I became very depressed and did not even want to live like that anymore. But I did not want to not be with my family so I sought help, talked to my doctor and my sister ( a therapist ) and got myself out of that slump. Today I am happy again and enjoy my changed life. I learned to not miss the things I lost but to be thankful for the things I have and can do.  We really can live with anything if we put our mind to it and have a support system around us. 

Such a good attitude to have, Pistol! So important to stay positive through all this.

I figure, there's no point being angry at what we cannot change. 

I've definitely had the anger, very much so, but it honestly just made me feel worse anyway. It's a poison. We have to focus on the wonderful things we can do, however small they are.

I've recently taken up crochet because it's something I can do whilst sitting or laying down, and that is bringing me joy, for example. Simple things too like sitting out in the garden, getting some sunshine, having a cup of tea, watching films / tv shows that I love. Cuddling my dog etc. 

We lost a lot from this illness. There's no denying that. But I think staying angry and always asking "why?", means we just lose even more. It means we miss living in the present. 

Over time we learn to cope better and better and as hard as it is, accepting where we are is the most useful. Radical acceptance, as they say. I've definitely found that helped me the most with my mental health, and how it all related.  It helped me see what I still did have in my life. 

Not all is lost. 

[DizzyPopcorn]

1 hour ago, Scout said:

Such a good attitude to have, Pistol! So important to stay positive through all this.

I figure, there's no point being angry at what we cannot change. 

I've definitely had the anger, very much so, but it honestly just made me feel worse anyway. It's a poison. We have to focus on the wonderful things we can do, however small they are.

I've recently taken up crochet because it's something I can do whilst sitting or laying down, and that is bringing me joy, for example. Simple things too like sitting out in the garden, getting some sunshine, having a cup of tea, watching films / tv shows that I love. Cuddling my dog etc. 

We lost a lot from this illness. There's no denying that. But I think staying angry and always asking "why?", means we just lose even more. It means we miss living in the present. 

Over time we learn to cope better and better and as hard as it is, accepting where we are is the most useful. Radical acceptance, as they say. I've definitely found that helped me the most with my mental health, and how it all related.  It helped me see what I still did have in my life. 

Not all is lost. 

I guess im just frustrated and venting. I apologize. I just wish i was normal and not feeling crap everyday.

I like your life outlook as well, although at the moment im really not sure i can adopt it. I agree though that anger will not help me in any way.

Once im diagnosed, my life will be better. At least i wont be "just anxious"

[Pistol]

@whoami - I went through all of the stages of grief - denial, anger … eventually acceptance. It is human and natural to feel that we do not deserve this and that we should not be afflicted with this. I thought: how can I still be of service to others when I cannot do anything? Why me? ---- That is all over now. I can do a lot - this forum, helping others in any way I can. I keep up with my friends and family by phone, I pray for people that need it or cannot pray themselves, I try to share what I have learned through this illness. I DEFINITELY am a wiser, more patient, less self-centered person now.  And I have learned that there is so much we can give!!!!

@Scout - how great that you picked up crocheting!!! You can do all sorts of good with that. You can make things as presents ( pot holders or blankets, even curtains )- I know an older lady in our community who crochets baby hats and delivers them to the maternity ward to be given out to the newborns. Simple yhings like that can connect us to the world, let us be useful and also be aware that what we CAN do is what others cannot b/c they are too busy. I myself, with my background of being an RN - receive many calls or questions from people around me asking about medical things. This is a way I can still use my education - and if I do not know the answer I know how to research, since I know the medical lingo and can go through studies etc. Whatever we learned to do - we can still use this to be useful to others. It is so important that we see that!!! 

[Scout]

@DizzyPopcorn No need to apologise. I totally understand why you're feeling angry. It's such a difficult place to be in and it takes a lot of adjusting. Things will get better though. I know that sounds rather corny, but it is true. There are many treatment options and there is lots of hope, so please hold on to that! 

@Pistol So very true! And thank you for the encouragement with the crochet! I am absolutely loving it and surprised that I can actually... do something! Having lots of fun and would love to crochet blankets for the homeless when I get a bit more confident with my stitches. Do you crochet? (I might start a separate thread in the Chit-Chat forum, so I don't overtake @lieze's thread!)

 

[Random-Symptom Man]

@DizzyPopcorn go ahead and be angry if you are angry. I've done plenty of damage to myself by ignoring how I feel. If you bottle it up, it will come out anyways. It's just more likely to hurt yourself and others if you bottle it up.

Not having a diagnosis and the proper care sucks. So hang in there. It sounds like a frustrating time. It's okay to be frustrated with the lack of speed medicine seems to take with dysautonomia. Waiting, waiting, waiting. Then bad appointments.  Then more waiting.

Fear bleeds into all of this. There is so much uncertainty. What if ______? How could it not? It sucks! I sometimes burst out in anger in response to my fears. It's even harder to deal with when I see fear in my family's eyes. 

My therapist keeps telling me that I can't get to the acceptance part if I don't process all of my emotions. Apparently, there is no short cut. 

It's not easy for me. I wouldn't expect it to be easy for anyone else, so I have to remind myself to give myself the same leniency I'd give others. I hope I get to a more zen place in time.