Feeling alone caring for my Father

[Awhitty]

Hello Everyone. I just came across this forum and thought this was the right place to explain my story. I hope that maybe I will learn from other stories and I really hope to find support. I will try not to write a novel but my story is pretty lengthy. (my apologies)

I am 26 years old and I am giving care to my father(57). My parents divorced when I was about 2years old. My mother moved on pretty quickly and my step-father was really the one who helped raise me. My real father was never around and I only had seen him once a year from age 2 until 14. He would claim he was working all the time but growing up I just thought he didn't want to be my father. Lots of emotional baggage was there. lol As you probably can imagine.

Jumping forward at age 14 until age 15 I had not seen him at all. A few phone calls is all my brother and I had received from him. Finally around my 15th birthday he sat my brother and I down and explained why he hadn't seen us at all that year. He told us he had MS. He explained that he had a huge episode that left him paralyzed for a few days until one of the woman he was dating at the time came to his apartment to see where he was. (he never reported to work) Obviously he did not go in to many details but I now can imagine what had happened being paralyzed in his bed for a few days alone.

He then decided to move out of the city to the country. He bought a house about a half hour from where I was living with my mother in hopes to have quiet and reconnect a better relationship with my brother and I. Let me tell you that was an adjustment. Here I went from having basically no relationship to him begging us to forgive his choices and move forward. It was hard. Little by little I noticed what MS was. Little by little my anger grew and resentment set in. Here I needed him my whole life and now when I get to have a relationship with him it is not what I expected.

Moving forward to when I was 21 and had my first child. With the birth of my daughter I really understood parent child relationships better. I decided that I needed my father and that I was going to forgive and move forward. We talked and left everything out in the open to be discussed. We have now grown into having the best father daughter relationship anyone could ask for. But now here comes the recent events...

My father is now depending on me to care for him. Unfortunately he never remarried and is not dating. The last woman he dated decided she was not open to caring for him and called it quits. My father has really no one. He has lost his parents & siblings and really that only leaves my brother and I. My brother has a lot of resentment towards our father for the past and believes that he wasn't there for us when we needed him so why should we be here for him now. My brother refuses to help or even care what is going on with my dad's health. It is all on my shoulders.

I am 26 now with two children 2&4. I have a husband and I am by choice a stay at home mommy. Now to add to the list I care for my father. I clean his home, grocery shop for him, do his laundry, pick up his medications, take him to all his appointments, keep up his outside lawn care, and more... I do understand that my fathers quality of life is decreasing and that we are going to add more to my list. Don't get me wrong I am not bitter but I have my moments where I feel so alone in this. My brother does not help and my dh tries to but at the end of the day as much as my dh tries to understand how I feel sadly he does not.

Now my father recently had another MRI and it showed that the lesions are really bad now. He is currently on Avonex and that they are setting him up for infusions. He has been getting worse with his mobility and actually a couple months ago had an episode at my home. He fell and couldn't move. I admit it scared me because I had never seen how exactly bad this really was getting. We decided to put his house up for sale so we could move him closer to my home so he could get extra care and take a little weight off my shoulders. But with this economy it is not so easy to sell your home. Not to mention everything to do with his home is up to me. Plus added stress of seeking out a place for him to go once it does sell.

All in all my point of this post was to vent. I feel so alone and I sometimes feel like I resort back to this little girl that just wants her daddy. You know what I mean. I never expected to care for my parent this early in life. I really have no one to talk to that understands. I feel like every time I see him it is a harsh reality of how bad the MS is taking over and I hurt for him. I feel like I was totally jipped of a decent relationship. But mostly I feel angry at the MS for taking away those precious moments my father could have had with my children. (holding, playing, chasing) I am angry with my brother. If he didnt want to help his father you would think he would want to help his little sister. I just feel like the weight of everything rest on my shoulders alone and all I really think I want to do is grieve about my loss in the situation.

Thanks for reading my novel. The biggest thing besides the stress is just that I really hurt for him. As bad as I feel MS has taken over my life I know what it has taken from my father. Any ideas or comments are much appreciated!

Amanda

[Jules A]

Hey Amanda,
I'm so sorry you have to be here but glad you found us. Kudos to you for finding it in your heart to forgive and move forward in the relationship with your father. I'm not sure I could have done the same so I applaud you.

As for his care now if he isn't able to get professinal home health care sadly you should probably start looking for placement for him. It is unfortunate but MS as you well know continues to get worse and you are not equipped to do singlehandedly what a trained team will find difficult which is provide full care. My biggest concern for you is caregiver burn out and there is plently of information if you want to google that term.

You need to be at the top of your game to care for your young family and it is not being selfish to accept that and make changes. Please keep us posted and best wishes for you and your family.

[Milhous]

It is fantastic that you found it in your heart to forgive and develop a relationship with him.

Look into getting home health--It has helped me immensely
if he qualifies for medicaid they have programs (at least in my state) to help one to stay in their home.

be careful yourself as you do not to be layed up if he is falling you may need a lift to do the lifting him off the floor.
Occupational therapy can help with assessing the home and helping with ways to improve and decrease the chances of falling home health can help you with that or a doctors office may be a way to get you connected.

Maybe a assisted living may be available -- where he can have some help if he needs it -- does not have to mow the lawn and stuff.

good luck in finding help

[cosake]

Jules and Milhous have both made excellent replies.

I will just say that you sound like an incredible young lady to have forgiven and moved on to caregiving.

Do not shoulder this burden alone. You will burn yourself out and leave nothing for your children or husband, let alone for you.

Definitely find out about home health aides. Do you belong to a church community that could help ?

Contact your local Social Services hotline and get some direction on where to go for help. In our area you can dial 211 to get connected.

Take care of yourself and good luck.

PS - This board is one of the best places to be for MS support !

[Awhitty]

Thank you for replying to my post. Also thank you for the warm wishes and tips. It wasn't so hard for me to forgive as it was harder for me to forget. I feel like a huge relief was given when I decided to move forward in a relationship with him.

We all make mistakes and poor choices. I just feel like it is bad enough to have MS let only have MS and be alone. I wouldn't wish that on anyone. At the end of the day no one should have to go through this disease by themselves.

As far as home care, he lives pretty far into the country which is harder to get the in home care that he needs. This is why we put his house on the market. I have found a few assisted living places he would be more than happy to go to but having his house he can not afford to pay for both until the house sells.

So I am just trudging through. I have been told from my mother that I need to take care of myself and my family first, but it is so hard not to feel badly or have guilt when he is all alone.

My father is a stubborn and prideful man so caring for him is difficult sometimes. I went out and got him a walker and installed many things to keep him safer and make his day to day life a bit easier. It took him awhile to swallow his pride and use the items my husband and I got for him. Now if you ask him he is very thankful to have them.

Can anyone tell me if this gets any easier? I mean not the caring physically for him but the emotional part. Do you eventually come to terms with this? I feel like I am on a roller coaster and it just keeps going and never stops for a rest. It scares me where he will be in 5 years physically. I just wish I knew the right words to say to him.

[Milhous]

It is hard to admit you need help and it has gotten easier for me as my MS has gotten worse so I have had to ask for more and more help.

Have you gotten in touch with a Home health agency-- I know around here they sometime travel quite far.
Is there a teen close by that could help with some of the outside chores?

Our pride can be difficult to handle as none of us want to admit we can not do it and we are in need of help and that takes a while to get over that--we all grieve at our own pace and some never get though it. Depression can be a big part of the dease and the nature of it does not help you feel good one day and the next you are knocked down with something else and you have to learn a new way of coping.

Prays that things will work out for you and your Father.