New Caregiver

[maddoxaj]

Hi. I am glad I found this forum. My mother was diagnosed with ALS a little over a year ago. About 6 weeks ago she got a trach and has been in the hospital ever since. (the trach wasn't really something I personally thought was a good idea, however I digress) She is going to be coming home next week and I (along with everyone else in my family) are a nervous wreck. This past week we had to take classes at the hospital to learn how to take care of the trach as well as her. This is such a difficult time, I truly hope to find some understanding support here. I am not my mother's only caregiver, but I am one of them and I already feel overwhelmed. Even in the hospital helping her is overwhelming. Did anyone else feel this way?

Also another important question. My mother is to the point where she doesn't write well. And when you ask her questions (she understands you perfectly as a doctor came into the room just thursday and asked her questions and she responded correctly by squeezing his hand) she doesn't respond. How can I get her to respond? She will just lay there and either cry (which is HEARTBREAKING) or she won't respond, though she got your attention b/c she wanted something. It's really mentally and physically frustrating, more so for my dad. What can I do to help that?

Thank you in advance, and I look forward to getting to know you all and for the support. Sorry, I feel like I just poured my heart out , I guess I'm just truly overwhelmed. I know it's more difficult for my mother, but I want to be strong for her and my family.

 

[Al]

Hi there. It's not easy being a caregiver and with a vent it makes things a lot more stressful. Feel free to express your fears or concerns or questions here. Most of us understand and will try to help when we can. It gets a bit quiet around here sometimes on weekends so don't think you're being ignored.

AL.

 

[califsand]

Communication ideas

Hi there,

It's not easy being a caregiver even if you share the responsibility with others. There is nothing worse than seeing someone you love go through such a horrible illness...

My father has had difficulty communicating for a while and when he could no longer write we did get him a computer. It was slow but he could type and that worked great... being able to surf the net gave him a lot of joy, he listened to music, played poker and sent people greeting cards like crazy.

One of the things that we did that really aided in the communication was to make him a list of common requests. They are laminated and in a book... he could leaf through the pages and point at what we wanted. Everything was there from "I'm hungry", "I need to go pee", "change my shirt", "I want to be alone", "change the channel on my tv" to "I am in pain"... it helped us all a lot to have that resource for him. Now most days he can only move his eyes and we have one that says YES, one that says NO and when you ask him a question he looks at one of them for his response.

There are things that you can do but it depends on your moms mobility. If she is under Hospice care they can have the Occupational Therapist come out and they can usually suggest things specific to her that would help. I suggest taking full advantage of whatever resources are offered. The MDA can provide money towards a communication device and they are worth contacting because they do most of the work for you, in order to facilitate whatever you need.

Hang in there!

Sandy

 

[katekath]

Hello,

My mum got a trach about 3 weeks ago. I can related to you about being overwhelmed. There are so much information to digest and so many things to be done at the same time. I went into anxiety mode so many times, but kept reminding myself to be strong for my mum and sister. Our abusive father is not helping much either and our relatives have somewhat disappear. So...*hugs* We will get through it all, yeah?

And similar to what Sandy had suggested, a list of common request should provide some help in communication. What I did for my mum was flips cards with words she commonly used such as pain, yes, no, suction, fever...

But I haven't got my mum to try it out yet because my sister insisted my handwriting is atrocious and insisted on re-writing them. LOL. Will update on whether it works well later.

Wan

 

[marvlb]

My wife has been diagnosed with Frontal Temporal Dementia and ALS. FTD diagnosed 12 months ago and ALS last month. She walks with a cane but is having troubles speaking and swallowing. She is still on solid food. The FTD makes her do things opposite to what she should do. EG: If she starts to cough or choke while eating,rather than stopping eating, the compulsive aspect of FTD makes her put more food or drink in her mouth. I retired in April to take care of her 24/7. I already see that this 24/7 is not posisble. We now have an aide two days per week (5 hours per day)

For the combination of FTD and ALS what can I expect in the near future?
Any suggestions for coping with these combined illnesses?

I don't even know whay a Trach is?

Thanks for your assistance.

Marvin

 

[CindyM]

Hello Marv- Welcome to the forum although I am sorry to hear about your wife. ALS and dementia is a double whammy. I am so sorry.

Feel free to vent or ask questions anytime. The search feature is a great resource, because almost any topic has been discussed at one time or another. Again, welcome! Cindy

 

[brooksea]

Hi Marvin,

Sorry about your wife. Hope you find some useful information on this forum that will be of help to you and your situation.

A Trach is Tracheostomy where a whole is cut in the windpipe to allow the person to breathe with either a BiPap or Ventilator when their diaphragm muscles will no longer push the lungs.

This link describes it much better than I:

Tracheotomy - Wikipedia, the free encyclopedia