New Caregiver

[JaimeAlbert]

Hello, my name is Jaime, and I've been caregiving for a close friend of mine, who's been diagnosed with ALS.

I decided to try the forum, to help understand my own emotions and questions I have while watching the awful disease that is taking a friend of mine.

Im 32, my friend is 71. He's been a huge support in my life and I feel such an honour that I am able to help him through this diagnoses as much as possible.

I've read up as much as I can on the disease, but I am still so very overwhelmed with emotions that it triggers for me as a care giver, as well as trying to stay strong for him.

Does anyone have advice for literature, or ways to calm an anxious mind about this awful disease. I am really looking for ways to keep me healthy so I can provide the best care I can.

Thank you in advance.

 

[lgelb]

Hi, Jaime, welcome and thanks for being there for your friend.

You can't stop feeling anxious for him and you, and you wouldn't be able to help him if you did, but you can control how these feelings affect you. Trying to spend some time each day or night doing something that has meaning for you outside your relationship with him is the best way I know. Staying ahead of equipment and adaptive needs is another way. If the anxiety can't be addressed in these ways, and prevents you from doing what you need to do, counseling and/or antidepressants are also options.

Best,
Laurie

 

[affected]

While this is part of being a CALS, what helped me most were talking to others going through the same thing (helped me know my feelings were normal), seeing a counsellor regularly so I could spend some time working on myself, and taking an antidepressant.

No matter how hard this is, you are doing something so important by caring for your friend. Welcome!

 

[Angiegal]

Hi Jamie.
Greetings from Kitchener!
You've found an amazing place. The CALs here are so helpful and knowledgeable! You'll get to know more of us as you continue to read through the threads. I think it's awesome that you're helping out your friend!

Angie

 

[Benals]

Jamie I am also a new caregiver. I am scared and overwhelmed. I will be happy to listen to you anytime. Some days the fear overtakes me. I am 64 my husband who was diagnosed with ALS is also 64. I am willing to be there for you

 

[JaimeAlbert]

Thank you everyone for your kind words and support.

I get overwhelmed with feeling like I should be doing more, and selfish when I need time for me to balance out.
I feel like my endurance is weakening, I notice I fatique so easily and I need more and more time to sleep or just be alone. My patience is challenged with unexpected things that pop up in our schedule, and push back the things that make the day go by with less bumps. I am easily annoyed in my own personal life when i try to catch up on all the things I need to do, such as laundry, banking, groceries, I feel annoyed and angry that I can't do it all.

I feel guilty for having these feelings, I mean, its not me with my body completely failing, while my mind is trapped inside. It makes me feel selfish.

I can't see to organize my thoughts of slow them down

Thanks for the space to vent and get it all out.

 

[affected]

Two things I would say:

1. Sustainability - you have to be able to sustain this or you will burn out and then what happens to your PALS? This is not being selfish it's being realistic and caring about both of you.

2. Workload - if your PALS were in a hospital would there be one single person doing everything for him? Or would each staff member work 8 hour shifts, then have 16 hours off, then have 2 days off completely each week? Would some people do the cooking, others the cleaning, others the personal care, and others the finance and admin? Oh really, so you feel guilty that you cannot do the equivalent of about 8 full time jobs without feeling overwhelmed and tired? :lol:

OK so now take a deep breath, realise you are in fact a super hero, and see if there are some things you can let go, some ways others can help out, and some ways you can really get some breaks to recharge. As CALS we totally understand, what we do is huge and most people don't realise that it is nothing like working a job, it is a life!

 

[JaimeAlbert]

That was straight to the point. LOL you're totally right. I didn't see that perspective. Its funny, if someone was asking me my opinion in a similar situation, I'd say the same thing. Take care of yourself first, so you're able to take care of others...however it seems I forget when it come to me, and my well being.
Thank you for your words. Helpful.

 

[sweetmozart]

The things I do are activities with my dog. I work. I also belong to a small community group.

If you were ever a fan of Seinfeld, it's Goerge's idea of having different "circles" of people. It helps a lot to have other other things to do and think about.

I like Laurie's advice about staying ahead of equipment needs, too. We've never done that, and it does tend to produce stress. My pals just never embraced that idea

Next step will probably be hire a part time helper for showers and feeding.

I wish you the best.

 

[Dave K]

help understand my own emotions and questions I have

It helps to meet regularly with other CALS. You will find all of your emotions are "normal" (for a CALS). Somehow, it really helps to talk to others who are having the same issues. The separate CALS forum on this site is helpful, but finding a local support group would be even better.

ways to calm an anxious mind

Mentally, it's important to realize that the PALS is not the only one with ALS. The CALS also has it. Everyone in the family has it. Awareness of this fact can be calming at times.

Physically, our brains can't be separated from our bodies. To combat anxiety, and to be an effective caregiver, you need rest, exercise, and (at least occasionally) play time/shore leave. As the PALS condition progresses, more people are needed to cover shifts. No matter how well you train your mind, it is not possible for a single human to be an effective, healthy caregiver to someone who requires around the clock attention. There is nothing wrong with hiring a paid care worker so you can take care of yourself, when the alternative is being a burned out, ineffective caregiver.

 

[JaimeAlbert]

Seriously just reading some advice and ideas that others have had, or have during their own situation does ease my mind.
Thank you everyone.

We're already at the stage where I am with him all morning, 8-5 most days, so I am in charge of all feedings through this slot, as well as assisting with showering along with a PSW. He's completely off food now, just a medical grade 'boost'.

I've been feeling a touch more in control of my time and emotions since joining the forum.

I always find that I get here, where I adapt to how I feel through this experience, and where we are in it....then he progresses more. Or he loses a capability, and then we seem to be frustrated all over again with learning how to make the steps through the next stage. We're installing a ramp for his home this weekend, has his legs are near giving out. Then I find myself, whats it going to be like tomorrow?....</3

I wish so much that someone could be me in advance what this will be like with more detail, I wish I could prep myself for what will happen. I think it moves so fast that I don't have time to mentally keep up.

Thank You everyone for your continued support.

 

[affected]

I get it. My Chris was rapid progression and I was just running the whole time. Read the sticky on anticipatory planning at the top of this forum section. That did make a huge difference, I often had things in advance waiting.

I also found that this place became my family and a huge support for me. We can give a ton of practical tips as well as loads of emotional support xxx

 

[Ceelea]

Hi Jamie,

I'm pretty new at this too -- and you are right, the folks here have so much wisdom and experience and are generous about sharing it. I can't imagine what these past months would have been like without these forums, even though I read much much more than I post! ("Well, the forum says..." or "What does the forum say... are oft-repeated phrases around here!)

The other thing that helped me was absolutely staring down what was happening and ( on my own, and with friends) letting out the sadness and anger and frustration at the start. When it comes back on a rough day, I can tell myself I've expressed that and move on (in that moment, of course, it's an ongoing thing). It helps me pull up my big girl panties and deal with what my PALS needs, when she needs it. We are also able, fortunately, to talk about it all. Often. Usually with obscenities, sometimes with laughter, and sometimes with hugs.

I don't know if that helps or not. It works for us, today.
Best,
Cee