UGH! Do I count?

[TakingCareofGram]

So...I'm sorry that my first post has to be negative, but, here it goes!

I am the only caretaker for my 70 y/o grandmother (who raised me) who has ALS. She was recently was admitted into in-home hospice, which, I think, is a mixed blessing. In one regard, we are getting more help. In another, it affirms a reality which I think both of us have tried to ignore.

In addition, her moods seem to have gone from bad to worse. Some days, no matter what I say, she's just MISERABLE to me. This afternoon, we got into a giant fight over nothing! I try to ask her if she'd like to eat (PEG tube), no. Switch chairs? No. OK fine. She tries to tell me something, I misunderstand her, she yells because I tried guess what she's saying. I tried to explain that sometimes I try to guess so she can save her breath. Doesn't matter, now she's yelling and crying, I leave the room and cry.

I've left my job. I have no life, I never leave the house, I didn't get to have a Christmas. I'm 30 years old, and I have literally given up everything...Now, don't get me wrong. I know the position she is in is a million times worse, but does it matter that my life has changed too?

I just feel invisible and insignificant sometimes, and after she passes, what will happen to me? I've lost my entire family to cancer, and now ALS, and I'm not sure what's going to happen. I"m engaged, and I know my fiance will be there to support me, but I'm just scared. I forget what it's like to go to dinner with friends, to go for a walk, to just sleep without constantly listen to see if she is breathing.

I guess this has gone around in circles, and I'm sorry for that. I'm just exhausted, and frustrated, and needed to get it out. It's so hard because since I'm fairly young, none of my friends or fiance have ever been through anything like this, so I find it difficult to talk to them about it. This is my second time being the only caretaker for someone, and the second time I've just felt completely alone; like I'm on my own island.

Ok. Rant over...Thanks for listening.

 

[johnnyliverpool]

carers get the brunt of it for sure...toughest job in the world....u must put yourself first and your relationship and feel no guilt about doing so...then whats left u give to your gran....u r no good to anyone if all this makes u ill.......think of yourself.......after all u cant lend a friend a 50dollars if you are skint.......pooler..

 

[joni51]

I am so sorry for what you are feeling. I am a caregiver now too. We have our good and bad days just like our pals...

 

[Ladyinn]

I am a PALS and was a caregiver for my husband before I got sick and after he died I became a caregiver for my 80+ mother while I was a PALS. I know your emotional breakdown - it is normal and don't beat yourself up.

One thing I do know is that you need to take care of yourself before you can care for others. Even if it means a bubble bath and soaking for 10-15 minutes ! Or, I would go down to the barn and scream and cry.... you have to find a way to "let loose" of the caregiver stress. Is there a caregiver support group in your town or at your church? That was a big help to me.

Good luck and know your grandma is lucky to have you and at the same time angry that she needs you.

 

[Judith]

TakingcareofGram,

You have not been very specific as to your grandmother’s ability to convey her wants.
Is your grandmother able to speak somewhat and you cannot understand her?
Can she still write?
If so, have you tried getting a dry erase board with the dry erase felt pen and having her write down her desires?

If she cannot speak and she cannot write, maybe you could make flash cards of certain phrases like; Do you want to eat? Do you want the TV on? Do you want to switch chairs?
It seems that would alleviate a lot of stress on both of you.

I am on hospice and they are great. Besides the nurse coming out, they have aides that will come out to take over quite a bit of the load you are trying to manage on your own, which does not seem to be working out.

Hospice also has volunteers who could come out to sit with your grandmother while you take off for a few hours. I hope you find a regimen that works out for both your sanity.

Judith

 

[mare]

Hi, Taking Care-

You absolutely count! First, I think you are remarkable for doing what you are doing.
You are so young to be doing such a difficult & demanding job. You are to be applauded for taking this on.

In addition to the previous suggestions, just remember to say to yourself that your grandmother is not necessarily lashing out at you (although I know it seems that way!), but at the disease.

It must be frightening for her, as you can imagine, and emotions are bound to be out-of-control. If you can stay focused in the moment, and give her validation ( i.e.- "I'm sorry I can't understand what you are saying"; "I can see this is so hard for you, Grandmother, and I'm so sorry that you have to go through this.")

You just do the best you can, but know that no one is perfect in every situation. But if you do everything out of love, that will come through.

As far as when she passes, you will be OK, because you will know that you did everything you could to be there for her & give her the love that she needs & wants.

That is all anyone can ask; that is all anyone desires- to leave this world feeling loved!

 

[arkallen]

Hi TakingcareofGran,

What a brave first post! I hope that you find great friendship and support here on these pages; and I was glad to read that you are engaged. I appreciated your description of the isolation of your role at a young age, and I think I understood that a little, although from a very different perspective. Something about your story makes me feel you have a pretty tough reserve of strength within you; I hope that you are able to lay hold of that and smile!

Blessings,
Roderick.

 

[abbas child]

Hi TakingcareofGram,

I think you probably know we want to help and support you, and at the same time want a "crash course" in all your situation entails in case there is something important left unsaid. I'm wondering if your Grandmother is experiencing panic and anxiety. That may well have been addressed by her doctors and now by hospice, but she may need some anti-anxiety meds if she isn't already on them. I also hope that you will be offered hospice aides or volunteers to give you some time off, to be away and regroup.

You do seriously have my respect for what you're doing for your Grandmother. And I, too, am so glad you are engaged--your life will go on, and after this current period is over, you will have so much experience and wisdom and also compassion...well beyond what is typical. I hope that you feel at home here at the forum, and know that the combined experiences are available for your support.

Hugs,
Ann

 

[TakingCareofGram]

Hi All,

Thank you so much for responding! To be clear, my grandmother still speaks, but has a very thick slur. She is currently refusing to use any of the communication boards that we have, or any notecards. She is unable to write. Basically, usually, I can understand her quite well, although I am the only one who can. However, when she is upset, or annoyed, she speaks quickly, which makes it difficult to understand, even for me.

She is currently on anti-anxiety and depression meds, and for the most part, they do help. Sometimes she just has her days, just like I have mine. The problem occurs when we have them on the same days I guess. Most times, I am able to just let her rant, as I know it's not about me, per se. I can't imagine what she is going through, or what it must feel like to have to depend on someone else for your every need.

Judith - I would love to utilize more of Hospice's services, however, again, my grandmother is very resistant to that. I am the only one she feels comfortable with, so I can never let anyone sit with her while I leave the house.

Oh well, it is what it is. Overall, I feel extremely grateful for the time that I get to spend with her, trying to make however long she has left as special, and peaceful as possible. Yesterday was just one of those days I suppose. I'm really thankful for all of your replies, and look forward to getting to know all of you!

 

[abbas child]

TakingCareofGram, this is of no help, just an agreement of sorts--the physical stuff and the losses may be difficult, and are. The emotional area is key to being able to stay at peace, and having to be around anger is very, very hard. I feel for you as you deal with that... I'm glad today is a new day!
Ann
p.s. it just occurred to me that if you haven't already had this discussion with her, you might try to explain-- when all is peaceful, that you need her to slow down when she is upset, since you do want to understand her. Your relationship with her is a lot like marriage, in that picking the right time to discuss an issue can be key... and I realize you may well know, and already have tried this.

 

[Jellycat]

Yes, You Count.
I know you know that really.

As you say, it gets difficult when the PALS is having a moment and the CALS is having a moment...at the same time.
Don't worry. Meltdowns happen. you love each other. If you didn't you wouldn't be able to do that in front of each other.
Being a carefgiver, expecially a solitary one is a lonely journey. Friends don't understand or are busy living their own lives. But what you are doing is all about love. You will never regret it. You are doing a marvellous thing. I relate to what you have posted because I find myself wanting to be there for my pals, yet wanting this pain to be over.

Everything passes. . It won't always be like this.
God bless you and your gran. Glad you are on the forum and glad you are having a better day today.

 

[tdamess]

you are also a safe person , for her to release her frustrations on she knows you will still love her after , she dont mean to do it or realize this is what she is doing

 

[Marjorie R. Wilcox]

This too will pass, Dear. And you will be a better person for having experienced it. I have been in your shoes many times, wondering if I would ever have a life for myself again. I was pushed beyond my limits many times. Just know that it won't always be that way. As someone said above, you will learn much from all this and have a better perspective on what counts in life. Endurance is what you need for now, and patience between you and your fiance. Take help where you can and take care of yourself too. You are special for even being involved as you are. Hugs work better than words sometimes, and say much more. Try to reach out to her and she will hopefully be more gentle with you. Bless you.

 

[TakingCareofGram]

Thank you all so much for the kind words of advice.

I agree wholeheartedly with the fact that I will never regret what I'm doing. The doctors all told me she would have to be put into a care facility and I told them there was no way. I will never let her be alone, just like she never let me be alone. I fully believe that I was sent here to do this for her, to care for her. I wouldn't have it any other way.

I think my frustration comes from the fact that I have so many emotions right now. When my mother had cancer, and I was her only caregiver, I was able to compartmentalize my feelings. For example, when I was with her, I was in "go mode." I was able to put my emotions aside to care for her. With my grandmother, I am watching her suffer, watching her die, and I can't seem to keep my emotions in check. Some days I am barely out of the room before I am in tears. I know this is normal, and even healthy, but for me, just makes this more difficult. Not being able to just buck up and keep my sadness in check just drains me even more.

I understand that it's not a bad thing per se....Last night my grandmother and I cried together and talked about what she would like to happen once she was gone, and asked what I was going to do with myself once she passes. Terribly emotional, but I think very good for the both of us.

I appreciate all of you on here so much for listening, talking, being vulnerable with complete strangers. I can't tell you all how much even just reading your posts helps to remind me that although I may be HERE alone, I'm never really alone.

Please remember you are loved, you are all brave and strong....As always hang in there, and remember to laugh - it helps!

 

[brooksea]

Bless you and good luck to you both! How sweet of you to take care of your grandmother!