[lynn01]

Depression setting in probably, overstressed yes. Family thinks my symptoms are bothering me more since I got the diagnosis of PN. My family says part of it is probably in my head. I will agree that stress and the not knowing the cause of the problem can cause symptoms to seem worse, but I am not crazy or imagening them. My mother has borderline abnormalities on her nerve conduction test hers is mainly mild sensory. For mine I have idiopathic sensory-motor PN. My life 41 years old asst. bookkeeper, I work 40 hrs a week, drive out to my disabled fathers house everyday to make sure he is ok, make sure he gets to all his doctor appointment and hope that my boss doesn't get upset because of how often I have to to take off work, manage his monthly finances along with my own since I am the one with the power of attorney, get home about 8:00 oclock every evening to listen to anything my family can find to complain about. When all I want is no more stress, peace and quite, and the life that I used to have. I am tired of waking up every morning with my back and hips hurting, I am tired of my legs feeling weak when I walk, I am tired of not being able to do things without getting tired and fatigued all the time. I am tired of not getting much help taking care of our father because my brother lives 1HOUR from his house and his job takes up to much of his time, well I have a job too. His comment is that my husband I and both work and that we have 2 incomes coming in and He is the only one that works in his household and he can't afford to lose his job, it's like it wouldn't be a big loss for me but it would be for him. Since he makes good money his wife has decided not to work anymore, I could see that being a problem if he lost his job. Well without my job we could not make it on one income alone. So am I stressed out yes very much so. Do I have a right to be angry? Sorry I just had to get my fustrations out. I'm sure some of you feel the same way at times to.

[Sheltiemom18]

Just a thought or two - is it possible that you can do some of the monitoring of your father by phone instead of going over every day, and does the community have home visit services to check up on the disabled and/or very elderly?

Reason I ask is that the Cleveland suburb in which we live has a very active Department on Aging/Disability. For the past year, we've been having a monthly housekeeping visit for $5. I keep up with it otherwise, but it's nice to have a young person who can really scrub up a storm in areas that don't need to be done as often as the usual.

If your dad is able to fully understand what his docs say to him when he does have an appointment, does the community offer transportation for the disabled/elderly to/from doctors appointments, prescription pick-up, and even certain days for shopping?

Sheltiemom

[daniella]

I am so sorry. I don't know how you keep up with the day you stated. It sounds like you are the last on your priority list but right now need to be on top. I can relate to the comments made by family and why some of my family members I have little contact with. My grandfather tells me basically when ever we speak that my PN and RSD pain is my fault. In those words.
I wish I had answers other then to tell the family members who are saying this how you feel and what can help you. As for your dad I agree with the other poster. Also I thought through medicaid they offer help to older people at their homes. Sorry if I am wrong but you may want to look into that.
All your feelings are very valid. I think for me when mentally I see myself breaking I need to really focus on what I can do to make things better so I don't crumble. I tend to let things build up and then loose it. So could you reach out to a friend,are there other family members that could help you and your dad,etc? You are in my thoughts.

[lynn01]

My father had a motorcycle accident a little over a year ago he his now pretty much wheel chair bound because of strength and balance issues caused by the stroke he had in ICU after the accident. He is on medicare and does receive some help through a home health agency with his bathing and some home physical therapy. I prepare his meals each day for him, he has to thicken all his liquids or he could aspirate into his lungs. He was in a nursing facility for 6 months after the accident, but perferes to live at home. I think alot of it is, he's lonely and doesn't like to be by himself. He lives about 15 minutes from were I live. I do not think that medicare will pay for transportation services. There is a service called visiting angels, but the their charge is $68 per each day they come out. His only income is his social security which is not much. If he could get on medicaid then he could get more services, but he does not qualify for home medcaid. They will only approve him for medcaid if he is in a nursing home. But don't worry someday our goverment will fix the system if were lucky and then people can get the help they need so they can still live at home. The stress of everything I have to deal with daily is taking a toll on my health and I know if i do not make some changes to relieve this stress then my health issues could get worse. Then what good would I be to anyone.

[lynn01]

Well I think I will go drop a bill off at the post office. And then maybe go shopping and spend some money. My husband just loves when I spend money!!!!!! Well it makes me feel good to buy something new for myself, which I do almost every Saturday since it is my only free day I have for myself each week. Husband works on Saturdays, daughters at work. I need more Saturdays in a week. Thanks everyone for your understanding. It's nice to have a place I can come and talk to everyone when I'm having a bad day.

[Rrae]

Originally Posted by lynn01

Depression setting in probably, overstressed yes.

When all I want is no more stress, peace and quite, and the life that I used to have. I am tired of waking up every morning with my back and hips hurting, I am tired of my legs feeling weak when I walk, I am tired of not being able to do things without getting tired and fatigued all the time. I am tired of not getting much help taking care of our father , well I have a job too. . So am I stressed out yes very much so. Do I have a right to be angry? Sorry I just had to get my fustrations out. I'm sure some of you feel the same way at times to.

Hi Lynn,
Oh, how I can relate.
I was thinking, if you were to say those exact words to your doctor, hopefully you can get something to have on hand to help cope when things get real heated. Not trying to be a pill pusher, but when I feel my nerves ready to explode, it's good to have an anti anxiety med on hand to help with the physical part........I'm thinking of the times that I've been to the brink and would start frantically pacing, ready to pull my hair out...and needing to use BIRTHING-TECHNIQUE breathing to keep from losing it!!

I too get tired of people saying 'in your head'....and doctors pushing stupid meds (that all seem to have to take 4-6 weeks to show effect).......
I don't want to have to keep trying different meds that need to be taken EVERY day for the 'in yer head' stuff.....(altho i have taken Wellbutrin on and off for the past 15 yrs ) but my point is: it's good to have something ON HAND to take IF NEEDED WHEN things get to be 'too much'.....

Do you feel you can talk like this to your doctor? Straightforward, just like your post?

The other posts here seem very helpful as well, especially for the practical stuff, the 'little things' which could invariably add up to be a huge help in taking some of the weight off your shoulders.
Ex: my pharmacy delivers meds.....
I too would check in to community assistant venues.......it wouldn't mean you don't 'care' for your father......it would be just what it's meant to be ....to help take the load off of hardworking family members.
Who knows, there are all sorts of volunteer-type of services where people will reach out in ways to help people such as your father, who are homebound and lonely.
Local churches perhaps.....?
Sometimes just getting the word out somehow is all it might take to get someone to realize your father is in this situation and could sure use a friendly visitor with a meal.....
We have a service thru our local hospital called 'meals on wheels'......free.

I really feel for you. You aren't getting the support you need.
Thank God for this forum
It's sure been a saving Grace to me!!

Truly Caring
Rae

[nide44]

My son was in an accident and is now a quad in a power chair. The family was in a great deal of stress as he had to be taken care of round the clock. He had to be catheterized every 4 hours. He was in and out of hospitals every 6-10 weeks with urinary infections
We found that we eventially had to create a situation where he was admitted to a nursing home and then stayed there until all the Medicaid home services were in place. Then he came home to live with daily services taking care of many of his needs. This took a great load off the family. Eventually a supra-pubic was put in place.
All this had to be done before he came home, to have the services he needed, taken care of by medicaid and other services.
If all your Dad has is his SSI or SSDI, he should qualify for many different services and programs. You need to contact an assist service to help you out. Legal Aid can steer you in the right direction. So can SS.
Also, if your sister-in-law doesn't work-she should donate some of her time to helping her father-in-law. After all, she's now a part of the family. Sounds as if your brother and his wife are being selfish and not handling the part of the load that they should.

[lynn01]

When my father was in the nursing home, I was in the process of getting medicaid it took a awhile because of some assets that were putting him over the limit. When you can't have more than $2000 in assets to qualify it makes it kinda hard. I also had to prove he did not qualify for VA benefits like pensions and that stuff, that was a stressful and long situation at the VA office. When I finally had medicaid pending the nursing home got tired of waiting because of the time it took. And not knowing if they would back pay to January when his medicare payments stopped. So they decided they were not going to let him stay any longer. Three weeks later after he went home medicaid approved him from the begining of January when medicare stop paying till the end of March when he left. What is wrong with this picture, it was a complete nightmare. By the way I did have an attorney helping me. That was also a waste of time, even with them talking to the nursing home and medicaid that did not help. The attorney could not understand either why they made him leave when it was filed and pending. Great system we have.

[Sheltiemom18]

Your situation is truly nightmarish. Given your father's condition is so serious and he needs so much care, have you access to a medical social worker in either a nursing home or local hospital? If he/she knows their stuff, they should be able to work out the game plan for him so that he gets all of the services he should. That's what their profession is all about - helping people who are in medical need.

Sheltiemom

[cyclelops]

Some of you have such difficult situations....anything I can say is pretty useless....but, my two cents is this; I admire all of you.