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miracleseeker

A caregiver's gut feeling

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My mom seemed off the past few days.  I first thought it was PD related but when she couldn't even stand straight to walk with me while I'm holding her then I knew she must have some kind of infection.   Because my mom has dementia along with PD she cannot tell me that she's feeling bad.  I can only assume based on what I can see on the outside.  I am swamped at work and cannot take my mom to see her doctor so I forced my sister to fly out and take her even though she was hesistant to do so because she has 4th of July plans.  Yeah I don't want to get into that but she came after I insisted  and found out today that my mom has Bronchitis with UTI and a fever.    She was given a 5 day supply of antibiotics.  I hope this will take care of it no time.  I was so worried also because I could not get her around the house with her being so weak and then I started thinking what if this was permanent and that it was PD related.  My anxiety level was sky high and now it's settled a little but when I start looking at the big picture and what's to come eventually I get all worked up again. 

 

My sister brought up the N word today.  Nursing Home.  Can't a person get sick without going to extreme of going to a home?  When my mom is virus free she's quite cooperative and can move around with assistance.   When my nephew and niece  were small they were constantly ill and my sister used up all her sick days from work to care for them.  Did she think of sending them to an orphanage? 

 

I have always been very close with my mom so just thinking about being away from her and not knowing how she's treated and how alone she would be in a home just makes me cry.  I expected my sister to be more supportive and do what needs to be done to make sure my mom stays put and is as healthy as she can be.  The opposite is true because she only thinks about her life and how free she wants to be and has always been.  Life is not fair indeed. 

Edited by miracleseeker

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Miracleseeker

My heart goes out to you tonight because I know exactly how you feel, not just about family but the worry and anxiety.  That "N" word comes up from my DH sister, she believes he should be in a nursing home.  His family had a reunion a couple of weeks ago,  and he wasn't invited because "he would be to much trouble".  I don't give them a second thought anymore it just made me so angry and frustrated.  As long as I am alive my DH will stay in this  house and he will receive the best care possible.  As a YOPD we never had the future we planned for, oh well life is tough, but we still find joy in the good days.  My DH has been diagnosed now with LBD and MSA, and having had DBS, well it's not good.  What is good is seeing very little of those who think he is to much trouble and I don't know what I'm doing.  Such is the life of a caregiver.  Stay strong for your mom, from all I've read here you are a first rate caregiver, and there is no doubt that you truly love you mom. Stay strong and healthy for yourself.

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Thank you so much for your encouragement.  My sister has been wanting to send my mom away for 8 years now.  I have always proven to her that I can take care of my mom alone until now.  She has never been this fragile before and it's very hard for me to care for her physically because her legs have been giving out so much. Because my sister is not offering her assistance I feel so powerless and scared.  I have friends that take care of their elderly parents but they don't do it alone like I do.  They all have family support and they all do it together as a team. 

 

If I pray really really hard will I get the solution I seek?  Will my mom get better and make my sister sorry for everything she's said?  Oh lord help me!

 

 

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You don't have to prove anything to your sister no matter how fragile your mom is, you are the one taking care of her.  Any decision that may or may not need to be made should be made by you, and only you.  You are scared and worried and have every right to be, and also a lot angry at your sister.  Now is not the time to do anything except the best you can, you must wait and see how your mom improves and you know more than anyone that it takes time for the UTI and the bronchitis to get better, and I know it's a scary time because you don't know how long it will take or if she will get better this time.  It's even harder doing it alone, no one by your side, no one supporting you.  Trust me I know.  I have lots of days like that, they are the kind of days that I simply live through. 

I did get my miracle last summer with my DH, I got the solution that I wanted though I only prayed for God's will, not that he spare my husband, but you know what.  it didn't change my sister in law at all, she wasn't sorry for anything that she said, she just twisted the words to suit her. So.....

Perhaps it's time to think outside the box so to speak, what do you need (besides a new sister) in order for you and your mom to do better, make your list.

When I was my mom's caregiver after she broke both her hips falling she was very fragile, and I had so much trouble moving her while the hips sorta healed, so I can imagine what you are going through, and I was all alone and working at the time too.  Hard, very hard.

If you'd like  private mail me and lets think out of the box together.

Prayer is always good, sometimes we forget His will isn't always ours, the key is not to give up.   You're having  a hard time right now, and with work it's even harder.

You and your mom are on my prayer list.

Cyber strength and cyber hugs being sent to you.  Stay strong Miracleseeker, stay strong!

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hi,

my heart goes out to you. perhaps your sister is unable to help. she may have very deep issues with your mom. everyone has reasons why they act in a certain way. my 

dh has had pd for 4 years and our daughter has backed away big time. she and her family moved here to be closer but she has found out that she simply can't deal with his disease so she blames me and now she chooses not to communicate in any way. no calls, emails or visits' it breaks my heart. i do have friends here who support and we have a support group that we started. the folks meet in our house twice a month. i can call or email them whenever i need to vent.

i can read this forum and i don't feel so all alone.

no one can begin to understand unless they are going through this.

my other sister lives a block away but she doesn't call or vist very often. we see her at church once a week and she talks about hersself and her family. seldom talks to my husband even though he is right there in front of her. it is amazing. but on the other hand they know that i am here as his caretaker and really don't know what to do. they like coming here to play cards but this is getting difficult for my husband to do.

if you can afford to hire help that would be good. there are agencies that can provide some free service. 

you are in my thoughts and prayers and there are many just like you who are taking on most of the care by yourself.

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I sorta have the same problem.. I am the youngest of 7 children, 5 of them are half.. I have 1 brother that I am not putting in this situation for reasons.. but I have a brother who lives in the same town as I do and is a lot older than I..another brother who lives no more than 45 minutes away, a sister who lives no more than an hour a way, and another sister who lives 15 hours away..Now my full brother is a great help and has taken on the responsibility of DPOA and I am second.. 

My sister who lives 15 hours away has for more than 2 years now visited our Dad a lot and I am very thankful for her..My brother who is the DPOA knows what he is seeing but I don't think he wants to believe it.. My other siblings well they make me and the other ones very very mad because all my Dad is wanting is to see them and they will not come..I have spoke to them, 1 says they will come then never shows up, (what can I expect drugs has hurt his mind set, sorry), the other one just says well you knew this was gonna happen.. Like really, nah I never knew that, thought Dad would live forever..:)..my other sister says she don't want to come because she cannot understand him, well if u listen really really hard you make out enough to know what he is talking about.. I see my Dad every day, but I too was scared for a long time.. as I was a CNA for 7 years and I feel that he will not be here much longer and I must face my fear and be there because he was there for me always..My brother who is the DPOA does his best and listens to me but then he shruggs me off and says what else can I do..like I said he don't want to see it...or believe it..hurts too bad... but I know how you guys feel, although we choose to have Dad put into a nursing facility because we tried to care for Dad in my home and with my children (6) Dad had a hard time dealing with them playing and being loud....Just want to say the Karma thing there is no need to wish that on anyone but I do believe the Dear Lord above will take care of it all at the end.. "Thy shall honor thy mother and father"..

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Things have calmed down for my mom  since 6 months ago.   Siblings will never change so I have to change the way I think.  Most importantly I need to have more confidence in myself to take care of my mom alone. Mind over matter.  Denial is a big part of why people avoid going home.  If they don't see it then it's not happening.

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Things have calmed down for my mom  since 6 months ago.   Siblings will never change so I have to change the way I think.  Most importantly I need to have more confidence in myself to take care of my mom alone. Mind over matter.  Denial is a big part of why people avoid going home.  If they don't see it then it's not happening.

You said so much in your post, things I needed to hear. Thank you. God bless you....this will all be clear to us one day....

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