Question and suggestions...

[myheart2yours]

Hi it's been a while since I have posted here but I guess up until now things have been the same. I am caegiver to my mother who has ALS and since diagnosed over a year ago my father has retired and for help they have moved in with me and my family
So everything was still goin the same until now...aa few months ago her vc was below 40 percent. We have not since got another reading. She chose not to vent or use feeding tubes. She is completely confined to a power chair. Can still talk with a slur but barely audible. (altho we can understand her no one else can) She eats soft foods still. But this past week she has been having a way harder time supporting her neck. She cries in pain and we have to put a neck brace on her. She also has a bad pain in the right side chest that she says shoots right through her back? And she chokes 10x worse than usual. She has asthma and it seems we give her spray more than we ever have. Today she informed us that she feels weak and like her body seems to be giving out whatever is left of her. She thinks her "time" is drawing to an end. her suggestion is that we contact hispice to monitor her and give her morphine for her pain. What do we do? Obviously she is weaker possibly dying I dont know. If you have been through these stages please message me. We dont know what to do at this point. I know she is tired but do we confine her to her bed until she dies? Im sad and confused, I have always thought to be prepared for this but I feel a bit overwhelmed. I cannot imagine how she must feel, although i wouldnt know it cause she is a tough cookie Please any help is appreciated...:?

 

[halfin]

I am sorry to hear of your mother's troubles. She sounds like a strong and brave lady. I cannot speak from personal experience, but from what I have seen with other families that have gone through this, it sounds like your mom is right. It is time to call in hospice.

Hospice doesn't mean that you're giving up or that this is the end. They are there to support your mom and your family and make her comfortable. People may be on hospice for longer or shorter times depending on their progression, but many families have found the service to be very helpful during a difficult time.

I hope you and your family are able to get the help you need.

 

[abbas child]

I totally agree with Hal... and if your mother would rather be in bed, I'd think she should be allowed to stay there; but try and get her propped with pillows and turned as much as she can tolerate. In other words make her as comfortable as you are able. Hopefully Hospice will come soon and bring anything else she needs. I've been "through it" in the end stage of cancer with my Mother in Law. Very hard to be comfortable for long, so lots of little changes needed. Bless you for doing this, and it's wonderful you still understand and can communicate with her.

 

[g garcia]

According to my mother "if your ever lonely just sign up for hospice." Yesterday we had the social worker, the nurse, a bathing aide, a "vampire" (phlebotomist), a portable X-ray tech, and a lab pick-up courier all stop by. Six people in one day...

I actually went online and bought a wireless doorbell/intercom to mount on the front door because it seems like every time I use the restroom or attempt to take a half hour nap someone is banging on the front door.

Anyway, Hospice will give you a lot of support and help, even in ways you probably havn't thought of yet. They will help with the D.N.R. order, living will, find volunteers to write letters to old friends and scan and caption old photos, or just to listen to an old women who loves to talk about days gone by...

Hospice is great, as long as your loved one is not considering any extraordinary measures to extend their lives there is absolutely no reason not to sign up with them. I certainly have no regrets, they have picked up some of the work I used to feel overwhelmed by, and are helping me help Mom.

 

[sharona]

Hey watch the VAMPIRE thingy, That's was my job since 1967 until I retired, I hated when I had to retire due to vertigo & high blood pressure, I loved working with my patients & loved drawing blood .We vampires serve a very important part of diagnosing what's wrong with people.JUST TEASING YOU.GOD BLESS YOUR FAMILY.
Sharon

 

[joelc]

Everyone is correct, time to call Hospice. I can't encourage you enough to do that.

 

[pmbenb83]

Sorry to hear your mom is in such severe pain and having breathing difficulties. You mentioned that she is choking 10x worse than before, her breathing/asthma is worse with sharp shooting pains in her chest to her back. Could she maybe have aspiration pneumonia? I only ask this, because Eric was recently hospitalized with pneumonia and they questioned aspiration pneumonia.

I hope Hospice or some other homehealth people can give your mom some relief soon.

Take care.

 

[cris]

Hospice is a good way to go!

Have you tried a neck collar, not a brace? It is just foam and only helps keep their head from falling too far. My PALS didn't like the braces either.

My PALS also had the pain that your mom has. We found a wonderful chiropracter that came to our house and worked w/ him and the pain became much less. it has a lot to do w/ the lack of muscles and strength.. the joints and disks get out of place and cause severe pain. even a gentle neck rub helps.

Will be praying for your mom. God Bless!

 

[Katie C]

Definitly contact hospice. They will help you make her comfortable. They will offer you options through their physical therapist to help make her comfortable. They will give you help and support, both physical and psychological. If your mom is asking you to call them.. it's time to make that call.

 

[Katie C]

oh.. by the way... Hospice does not mean confining her to bed. Glen continued to attend his "club"... a dementia specific day care center.. for several months after we called in hospice. He in fact attended two days before he died!

 

[clairec]

Hi. I am so sorry for what you are going through with your mom. My dad passed in June after a short and horrible fight with ALS. I thought I would share with you some of my experience with this disease. My father was diagnosed in December and he and my mother moved in with my family and I for what they thought would be for just the winter. They live about 200 miles away in a NJ shore town and would be too far from my siblings and me especially since my mom doesn't drive. Well, my mother and I were asked in April by the dr. at the VA if we had thought about hospice. I told her that we didn't really know anything about it. The drs. at the ALS clinic never mentioned that my dad was ready for hospice. Well Dr. Miller from the VA explained to us what it was all about. Our whole family was devasted as we didn't think my dad was that bad. Although, he was no longer eating (feeding tube only) and we could see the disease was progressing, he was still managing to get around with the aid of a walker and wheelchair. I was really scared because whenever I thought of the word hospice I associated with a death sentence and generally had negative feelings about it
Well, I was so wrong, because hospice was the best thing we ever did. My father had a lot of anxiety and we knew he was scared. He didn't complain to us though because he felt terrible about what the disease was doing to US (not himself). He really was amazing. As you must know seeing your parent like that is truly heartbreaking. There was a chaplain who came to see my dad and she was so wonderful. Her talks with him (he had a lite writer/voice recorder)made him feel so much better. He was afraid to discuss certain things with my mom and siblings but she helped lighten his load. The morphine and ativan helped reduce his anxiety. The social worker explained to us that some people are on hospice for over a year. It's just a process of making your journey comfortable. My dad had told me that the worst part of ALS was the feeling of not being able to breathe. The medicine they provided really helped him relax and helped with his breathing. The hospice staff was so compassionate and I am so glad that my dad had these wonderful people around him as he went through his last couple of months. When my dad did pass on June 17th it was still a shock to all of us. I NEVER thought he would go that quickly. If you had asked me the day before, I would have said he'd still be with us for at least a couple of more months. It's really strange because he was still communicating and seemed okay the day prior. He did have several falls that week, though, and he had never done that before. Getting around was becoming extremely challenging for him and he could no longer move around on his own. I thought he would be bedridden first and then maybe have to go on a ventilator for his breathing (he did have bipap, suction machine, cough assist, etc.). I thought it would be more gradual but wasn't. Looking back I notice he slept alot more during the last couple of weeks. Here's the thing, though, every ALS case is unique and hospice is there to help you stay comfortable for as long as that may be. Your mom sounds alot like my dad ... strong and brave. I will pray for your family as you go through this. Also... I agree with Cris... a neck buddy is a great alternative to a brace. My dad used the neck buddy alot until it he became too tired and weak to use it.