Frustrated.

[lisaohgee]

I know I'm not here daily, like some of you. I do appreciate so much though all of your thoughts and kind words.

My mom refuses to accept hospice care. I brought it up to her, using advice from Lobster about not using the word "hospice" but "resources" and "support" and things of that nature.

She seemed inclined, but then found out Medicare onlycovers 80% and they'd have to pay the other 20%.

So no.

She needs it desperately, but I actually feel that my stepdad needs it more.

She's paralyzed from the neck down. She can only make noises. He is constantly adjusting and readjusting her on the couch because she also refuses to get a hospital bed, although she doesn't have the muscle ability to keep herself sitting upright.

She refuses to use the bipap. She's in constant pain, because she will not/ cannot get to the doctor, and they won't prescribe pain medicine without seeing her.

My stepdad has always shown signs of stress, signs of gloom. But this past weekend, he was MAD. Angry. He was yelling about how she refuses to do anything to help her, how she refuses to use the bi-pap and he thinks it's making her think goofy because she's not getting enough oxygen to her brain (I don't even know if this is possible?).

I told him in private to just GET a hospital bed. She might get upset and cry, but in reality, what can she do? And she DESPERATELY needs it. He says she eats, but she had one egg on Saturday morning and said she wasn't hungry around 1 p.m.

I just don't know what to do. I've tried everything I can think of. She also seems not totally with it. She'll just stare off into space or at the TV when we are talking, whereas before she'd look at my kids or me or something.

I really REALLY hate this disease.

 

[ScarlettK]

Lisa,

Bless your heart...I cannot tell you how saddened I am by your post. OK...here is my opinion.

Without a hospital bed, it is so difficult to maneuver someone paralyzed into a sitting position or even to care for their personal hygiene. Get that bed! If your mom were a healthy person giving care to your stepdad, she would make that RIGHT rational decision. So DO IT! Medicare has always paid 80%, so why the hesitation of hospice? Hospice is a LIFE SAVER to the caregivers and such a comfort to the PAL. I know the difficulty in making decisions for someone else, but your mom needs this. Of course wearing the bi-pap, getting a vent or getting PEG are all choices to sustain life. I agree with the PEG and the bi-pap, but a vent is such a personal choice which can sustain life indefinitely. The optimum word in that last sentence is CAN.

I hope my opinion has helped. I will continue to pray for you and your family.
Kaye

 

[lisaohgee]

Thanks Kaye. They won't pay the 20% for the hospice, especially sicne she doesn't really want it. If I was her medical proxy, I would have gotten the bed already, but I'm not. My stepdad is, and for some reason he is hesitant to do it, even though he knows she need it. I brought it up and he got very frustrated with me saying please don't make her cry. he's constantly adjusting and readjusting her.

She probably weighs about 80 pounds. Her feet are bent at a 65 degree angle. I can see her joints. Her arms and legs are so thin I can see bone.

 

[ScarlettK]

Oh, Lisa... I just cannot imagine it. My sister's right foot is curling in also, but she just was diagnosed in May of this year. I am so very sad for all of you. All you can do at this point is to pray. I will pray that your mom changes her mind about the bed and about hospice. Please imagine me hugging you very tightly...because I am sending you my comfort and my love now. Prayers are going up also. Love to you...
Kaye

 

[Alyoop]

I think th hospital bed choice, belongs to your stepdad, not your mother. It's him struggling to look after her. I wonder how the man has managed so long caring for her without one. Like others have said, just get one. I am sure it will be more comfortable for all concerned and may even help your mothers level of pain.

Eventually your stepdad will suffer physical injury, looking after someone in such a low position. Nurses don't do it, so neither should your family.

Best wishes
Aly

 

[lisaohgee]

Aly, I totally agree, but I can't convince him to get it. He's so worried about her getting upset, because when she starts crying, it just starts a tumble of things going downhill from there, but he desperately needs it.

 

[Alyoop]

It's a very difficult situation if he doesn't agree. I know you would have talked and talked to them both.
Maybe I would start screaming and crying myself. Low 02 can indeed make ones thinking a little off target to say the least. A doctor could help, but they don't want that either.
After my screaming attack, I would bury my head in the sand .
You are only human and if they won't listen then........

 

[grandmommyk]

I am so sorry you and your family are going through this. I do have a couple of thoughts. I don't know if they will be helpful, but I'll throw them out. I am also confused about the part of medicare only paying 80%. I know with regular medical care it is 80%., but I thought they covered 100% of hospice. Also if she goes on Hospice they will bring their own hospital bed. I don't think they will provide the bi-pap though. I think she needs to get it before going on Hospice. If she is going to totally refuse the bi-pap, than a good hospice agency would be the way to go. Hospice will also provide oxygen. It will in no way replace a bi-pap, but it might make her more comfortable.

You can call and talk to different agencies to see what they do and do not provide and also ask if the care is covered 100% by Medicare. Also every Hospice agency is different, so it really is good to get some referrals or at least talk with a few.

If none of that works, a recliner with pillows on both sides of her & one under her head might be more comfortable than a couch. You can also buy bed wedges in different sizes to put on her bed to elevate her feet and head. Those long body pillows on each side of her might help keep her situated too. Hope something in this helps.

 

[lisaohgee]

Thanks. I did just confirm Hospice is 100% covered by medicare. I am hoping this knowledge will persuade them to get it. Thanks again.

 

[LauraW]

Wow, so frustrating to see someone you love be in pain. My mom did not want the hospital bed either. I got it anyway, now she loves it. I wish I had some great advise for you...I will say a prayer!

 

[lisaohgee]

I informed my stepdad that it would be covered 100%. I got no response. The social worker is going to be calling him this week, but I'm just so angry. She's going to die. She can either die in pain, or she can die comfortably. Why am I the only one who sees this?

 

[brooksea]

My husband is also freaked out about hospice care. You have a very difficult situation to deal with. I hope they both will come around and accept this help! You have a "helicopter view" of their situation. That is why you are the only one that sees they need help! Sometimes being IN the situation blinds us to what needs to be done.


From Medicare:

What You Pay for Hospice Care
Medicare pays the hospice provider for your hospice care. There is no
deductible. You will have to pay the following:
■■ No more than $5 for each prescription drug and other similar
products for pain relief and symptom control.
■■ 5% of the Medicare-approved amount for inpatient respite care.
For example, if Medicare pays $100 per day for inpatient respite
care, you will pay $5 per day. The amount you pay for respite care
can change each year.
Hospice Care if You’re in a Medicare Advantage Plan or Other
Medicare Health Plan
All Medicare-covered services you get while in hospice care are
covered under Original Medicare, even if you’re in a Medicare
Advantage Plan (like an HMO or PPO) or other Medicare health plan.
That includes any Medicare-covered services for conditions unrelated
to your terminal illness or provided by your attending doctor.
A Medicare Advantage Plan is a type of Medicare health plan offered
by a private company that contracts with Medicare to provide you with
all your Medicare Part A and Part B benefits. However, if your plan
covers extra services not covered by Original Medicare (like dental and
vision benefits), your plan will continue to cover these extra services.

 

[trfogey]

Never do understand why people get freaked out about hospice care when they have ALS. It's like freaking out over getting a senior citizen's discount at a restaurant -- says more about the way you think about what you've got than it does about what you've got.

 

[mysticunicorn66]

We were told that if my sister needed certain equipment (like a speech device, power chair) to get those in place before the BIPAP. Our regional ALS loan closet sent the BIPAP and a suction machine to the house (hospice I am pretty sure will cover a suction machine). The hospital bed, we got from the local Lions Club's Convalescent Unit. The hospital bed has been great for sister. Got a different mattress for it though with a 3" memory foam pad and an alternating air pressure mattress pad. So far, we have not had any pressure sores at all (knock on wood). Nurses all say her skin looks beautiful.

 

[t34gib]

Hi Lisa, i cant imagine how frustrated and angry you are. and you have every right to be, this is a very difficult situation, even if your mother were willing, its still hard. im glad you found out about hospice, they will pay for meds, the bed, equipment, everything, they came in and gave my mom a bed (with a lift), a bipep , oxygen, suction machine, supplies., and most of all COMFORT. i do hope your stepdad gets them involved. im sure once the social worker talks to him, he will see the benefit. those social workers have a way of making people understand how badly its needed. im hoping the best for you, and your family.