My sister has had ALS for 12 years

[mysisterskeeper]

I have been her caregiver only since this past November. She lives with me. I also have a 19 year old daughter who lives at home. I get frustrated because family always says how they will help but always has excuses. I hate that she is now in the final stages and we aren't on the same team anymore. She seems to have a different perspective than mine. Some things about her medical care aren't so important to her. She seems to be mean sometimes. She forgets sometimes. She gets angry if you point it out because she thinks you are saying she is diminishing cognitively.

She still wears her bipap and goes from decisions about full code to DNR every week or so. She has a feeding tube but still eats small amounts of puree foods for pleasure. I have hospice involved. I get 18 hours of nursing a day and it feels like none because they always need something or she does because they don't do things like I do. I'm tired - emotionally and physically.

I know that as she progresses it will only get harder but I promised her I would do everything I could so she didn't suffer. We argue so much it seems but I'm sure it isn't much at all. I have clinical depression and epilepsy and try to stay as on top of my own health as possible, but sometimes I feel guilty because I realize exactly what I have taken on. I will see things on through to the end. She deserves that much. She goes back and forth about her wishes for a ventilator. I can understand to some extent why. Who would want to live that way.

 

[HelenL]

Part of the reason I am on this site is to learn from others... and though it scares me, I also try to figure out what I will want towards the end of my journey with ALS. I can't imagine how frustrating it is for both of you,,,

You're a good sister, to be there for her! I pray that you both muddle through her last phase with peace and grace. The friendships I've made here are different from any others, as we are all in different stages of this. I hope you will find the strength for all that you've taken on, and please come here for help, questions, and comfort.

 

[ottawa girl]

Well said Helen.

You are a most amazingly generous sister. CALS are such big hearted unsung heroes.

 

[Jennifer D]

mysisterskeeper,

Wow, I don't think you give yourself enought credit. You are amazing and I'm sure your sister appreciates how lucky she is to have you. I know its so hard on a day to day basis, but, please use this group to vent all you need. Please know that we are all here for you and your family. I wish you the peace and love to get through this tough time.

Jennifer

 

[mysisterskeeper]

So why do i feel so angry

 

[vzandt]

Why would you not feel angry? You are emotionally and physically tired. You are getting little help. You are unsure of your sisters wants. You are depressed and ill yourself......and you are facing a mountain of a journey.
What you have to know is that you can only do what you can do. You need to take care of yourself first. You need to not feel guilty. If your doing the best you can do....why feel guilty. Your an amazing person to take in your sister. It is hard. We all get angry...and you know what? We certainty have that right.

 

[mysisterskeeper]

sometimes I wonder how much longer she will live so she doesn't have to suffer anymore. 12 years is a long time. I have only taken care of her not even a year and I am tired. I feel guilty because I know I couldn't do this for 12 years. I worry she will live for years more and I will have to continue. I know she won't. I see the signs. I feel guilty about how I feel.

 

[HelenL]

You feel angry and guilty because you love her... you're only human, you're not perfect... it's overwhelming. Not to mention the amount of work, lack of sleep and worry. Don't beat yourself up for doing the best you can. If I were your sister, I'd be so relieved to be with you... and I'm sure she feels guilty too at times , I know I do. But ALS isn't in our control, but what we do with our attitude is to some degree (FTD notwithstanding).

I'm glad you came on here, I hope you will find it a family that supports each other.

 

[mysisterskeeper]

its one thing to talk to friends or people who don't experience a life like this, and they try to offer advice and understanding but it just feels different coming from people who actually live it. I hate when people say stuff like "Oh you are going to get such a big blessing for what you are doing." who gives a f#$% about a blessing when I am watching my sister die, making sure nurses who sometimes seem clueless understand the doctor's orders, filling in nursing shifts when they don't show up, waking up so many times at night I may as well stay woke, hear family tell me how much they will help and don't, sit in my car for hours just to get out of the house because I have no place that I feel like going or people to be around because I am fighting this damn depression again... yeah the blessing is coming, but I sure could use the damn thing now.

 

[Miss]

I wish I had some great words of wisdom for you, but there really are none. You aren't experiencing anything that most of us haven't felt. It is, unfortunately, the nature of the beast. The exhaustion can be absolutely overwhelming. With that, comes anger. All you want to do is get the job done and get some sleep. My husband used to tell me that I would have 40 years to sleep after he was gone. He did not mean to sound harsh, but it was. I find myself, even a year after his death, second guessing the way I handled some things, agonizing over my lack of patience with him sometimes. I constantly have to remind myself that I did my best, and for the most part, I did really good job. You are, too. Know that. Don't let yourself get consumed by guilt. The anger is normal - on both parts, yours and your sister's.

 

[cukita99]

wish i had a sister like u to take care of me. i have 5 n not one has taken care of me. i relay on hire help nn my son. i do my best to b nice n not much trouble.

 

[pscheffel]

You are a loving sister and your feelings are about your love for your 'dying' sister. I recently went to my primary care physician, he has been my doctor for 30 years (I'm only 33). I was concerned about all of the roller coaster if emotions I go thru daily and the toll it is taking on me. I am watching my Mom diminish in body and mind....daily...It is TRAUMA 24/7. And, having to be a Mother to 3 beautiful boys who are too young to even understand what is happening to their Oma. It is a constant battle....but my doctor (who by the way, has been my Mom's doctor for these 30 years as well) wouldn't prescribe me medication to even out my 'imbalance' so I thought. I know these are all normal emotions a person goes through when they are grieving, but our grieving is MUCH longer than those who lose loved ones from sudden things, such as heart attack or stroke....it's unfair....truly...but I've known about life being unfair for quite some time now. Just remember you are doing what you can and promised your sister you would, you are right with yourself and her, that is what matters. Take care of yourself.

 

[sallyb]

Wow you are a great sister. Every emotion & thought you have written about is one I'd wager most of us have felt daily. It is crap and you have every right to be angry and feel like you just can't go on. Thinking about how much longer is left is just acknowledging how hard this is, how scary the road ahead looks and wondering if you both have the strength to get through it. People that don't know this disease don't know how hard this is - it essentially an extended grieving process where you have to mourn each loss and adjust to each new reality. I don't think it is like any other loss, I really think it is one of the hardest things to face. You are doing your very best in very hard circumstances and if there is even a small chance that any family/friends would help even with small things if you spelt out the reality then I'd try. But do give yourself a break.

 

[mysisterskeeper]

coming to this forum and being able to get some things off my chest helps a lot.

 

[Barbie]

All the feelings you are having are normal! I agree--I hate when people outside this experience say things like you'll be repaid or blessed or you are amazing. they mean well, but geez--

I have found that talking and reading here makes me feel alot better. everyone here whether they agree or disagree with you understand what you are going thru.

For me, I was able to let go the guilt becasue I know every day I am doing my best. it may not be the best, but it is my best at that moment. you do sound amazing and I can understand your sister's waffling on care--she is not ready to let go of life. You say that family is all talk but no help? very common I think. maybe call one of them, and tell them they have to come over and stay with her for one day this week. try to nail them down to an exact day. if they won't commit--give them hell. Also, you have alot of nursing care. you need to get out a bit while they are there. you need a break. if the caregivers are not doing things right, give them a little more training.

please take care of yourself too. you are important!