Not sure how much more I can take

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Mandyintn12

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We are one week home on the vent .. We didn't have a option and it's what mom wanted .. But now doesn't trust it and it causes so much anxiety .. Mom is not sleeping .. Dad is not helping ( he has a bad heart and is on disability ) I have interviewed and hired a nighttime caregiver ( I sent her home early last night because mom was so upset and didn't like someone else being here ) the new caregiver was passive and not sure how it's gonna work out ( it won't ) I am supposed to go back to work Monday .. I havnt seen my family for very long in weeks .. We have a day time caregiver coming today .. She's late :( she will allow me to at least be able to go back to work .. Mom doesn't have and can not get Medicare or disability .. Help ... Any suggestions ...
 

BlueandGold

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Can she not get Medicare or disability because of lack of income over the years? Even if she didn't qualify for SSDI, if her income level is very low she should still qualify for SSI and with ALS she should automatically qualify for Medicare. I don't know your situation so maybe others more experienced with this can chime in.
 

Mandyintn12

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They say my dad makes too much money with his disability :(
 

Nikki J

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Sorry Mandy you are right unless the household income is very low no ssi and no medicare without ssdi. And probably too much income for medicaid. What a mess!
I am so sorry. Can your dad do anything? Is there anyone else to help in an emergency if the caretakers don't show?
Wish there were good answers
 

BlueandGold

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That doesn't make sense to me. From everything I've learned going through this process myself, ALS is an automatic qualifier for disability (even if you don't get payments you are still considered disabled) and that qualifies you for Medicare. I'm going to do some research and I'll get back to you.

Vince
 

BlueandGold

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Sorry Mandy you are right unless the household income is very low no ssi and no medicare without ssdi. And probably too much income for medicaid. What a mess!
I am so sorry. Can your dad do anything? Is there anyone else to help in an emergency if the caretakers don't show?
Wish there were good answers
I don't understand this Nikki. My wife makes a pretty good salary and there was never a mention of our household income when qualifying me for disability and for Medicare. The only thing we didn't qualify for was the SSI.
 

Annie's Phil

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As a start I would suggest having a calm but frank discussion with your parents about formulating a long-term care plan for your mother. She needs to understand that it's going to require other caregivers in the home or else moving into an institution.

Everyone involved needs to understand that there are limits to what any one person can do. After Annie died I was introduced to a young couple, the husband of which had ALS. They were seeking advice regarding what lay ahead. One thing I addressed was that, should the PALS remain alive sufficiently long, every caregiver will eventually encounter a load which they simply can not lift regardless of their strongest desire to do so. I pointed to a coin on the floor a said "I know I can pick that up." Then I pointed to their van outside and said "I know I can't pick that up. Somewhere between that coin and the van is the limit of what I can physically lift. I don't know exactly where the breaking point is, but it is there." Analogous to the physical strength limits there are emotional and mental limits. Everybody's limits are different, but we all have them. I don't know of a long-term CALS who at the end of the journey isn't exhausted physically, mentally, and emotionally.

This is a fact that your mother needs to understand, and so allow her to be an active participant in deciding just how her caregiving needs are going to be met given the reality. Ultimately, she's going to have to accept things that, were circumstances different, she wouldn't accept. But as Max says "It is what it is." I think the more that she is involved in her own care-giving plans the more likely she'll accept them as necessary.

I wish you well.

Grace and peace to you.
-Phil
 

Nikki J

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I think the issue is Mandy's mom does not have enough current work credits to get ssdi. No ssdi no medicare. It happened to my sister who had been a stay at home mom while her daughter was young and then she got als before she went back to work. You are right no income restriction for household for ssdi as long as you are not earning more than the small allowed amount sorry Mandy for hijack
 

Green Queen

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Mandy you are in my prayers. I truly hope you get some positive answers.
God be with you, Janelle x
 

GilWest

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Welcome to the wonderful world of home ventilators! The first month or so will be challenging givers are ususally put off by a vent patient. Keep at it. It will get better and you will settle into a routine. Just do what you need to do. Mom was uncomfortable with our caregiver at first, but I told her there was no alternative. I could not put my own family and career out on her account and that she HAD to get over it. I stayed home and assisted (wath our caregiver for the first two weeks. Now things are a great as they could be...but I still have been living here for 8 months and have no life outside of work and sitting nights with her. BUT every situation is different. Mom is in a comfortable financial situation and can afford to do this.
 

Barbie

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Blue and Gold, stay home moms/wives can not get SSDI or Medicare...must have a certain number of work credits out side the home within the last 10 years. it is a damn mess and so wrong (so much for "family values") most people dont realize this until it is too late.

Mandy--are you working with an agency or private pay? Keep looking for the right caregiver and try to get extras. it is so tough and time consuming. I know your mom wanted the vent, but was there a family meeting before hand? it is not a decision to enter into lightly or alone...as the care needed is intense. We have had many debates here on this website and I am not trying to start a war or hijack your thread, but I have personally told my husband that I would not stay and take care of him if he made that decision.

Hugs to you
 

GilWest

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It's not that the care is intense. It is having to be "there" 24/7. None of the actual care really changes. It just becomes one more thing to do. I think the question becomes, "To what end are we doing this?"
 

affected

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I so agree Gil.

Up until on the very last week or so, I could settle Chris in his recliner chair and secure his assurance he would not move and duck down to the shops (20 min drive away) and be back within an hour. I didn't do it often, but if stuck I could. I could also get on the ride on mower and spend an hour at a time mowing, then come back and check on him.

I can't imagine organising 24/7 care.

Do you sleep in the same room as your mum or have a monitor or something? I know that I can sleep very heavily at some points of the night and would have worried I may not hear even through a monitor. Mostly I seem to wake easily, but I know I do have an hour or two where I'm very deep.
 

GilWest

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There is no real organizing at this time for us. My help comes from 8-4, does her thing, and then I am there from 4-8. Home health stops by twice a week, palliative care once a month, and family doctor's NP once a month. I sleep in the next room from about 12-6. The vent wakes me when there is a problem, but it never really alarms. You learn to sleep lightly in times like these.
 

lgelb

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A number of us care(d) for PALS who could not be left alone at all, often for years. Today was the summer solstice and I hope you found some light, if only in your fingertips when you touched your loved one.

Since there is still an hour left on Father's Day in this time zone, I will also take this opportunity to salute and thank the wives, husbands, sons, daughters, mothers, fathers and friends who, like Gil, bear the weight of 24-hour days, 7-day weeks and the journey that ends but is never over.

--Laurie
 
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