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My horrible day...Lord grant me strength


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My dad is disabled with Primary Lateral Sclerosis. It is like ALS or Lou Gehrig's disease but instead of taking 3-5 years to die, it takes decades. He has had symptoms of it for 15 years and now his hands, arms, speech, swallowing, etc are becoming more severly affected. His speech is slow and low and his fine motor skills are totally gone. He couldn't cut cake with a fork the other day. He has been in a wheel chair for about 5-6 years. Until a few weeks ago, he lived independently...although he shouldn't have. He got very weak, went to the hospital for a week, then to the rehab for 10 days, home for 2...fell and back to the hospital. About a week ago, we put him in a nursing home for rehab (nothing really to rehab but he can't go home).

 

Well, he can't go to assisted living until he gets a Medicaid waiver to pay for the $4500 a month care. I have toured a handful of them and literally have been in tears thinking of putting my dad in a 8X10 room with 2 twin beds and a toilet in the corner with a curtain around it. All of the places that accept a Medicaid waiver are like this or they can't take his level of care which is maximum!

 

He called me this morning, crying and sobbing uncontrollably (emotional lability is part of the disease) because he said the aids are mean, won't take time to care for him, won't give him a wash cloth to wash his face, help put his teeth in, jam his legs into the wheel chair pedals, etc. He can barely sit up on the side of his bed, can't cut his food. etc!!!!!!

 

So, for lack of anything else to do with him....I am bringing him to my house. I could let him go home and pack up my 2 kids and their school work and bring it to his house every day but that isn't really feasible for me to do. (nor do I want to!) We have little DD's bedroom that has just been used as a playroom since she sleeps with me so I cleaned that all out. This evening we are going to get his hospital bed from his house. His friends are building a w/c ramp for the front of my house and we will make it through.

 

 

All great and well, except my dad is a cantankorous (sp) old man! He is grouchy, demanding, nothing anyone is going to do for him is going to be good enough...!!!!!!!! I did tell him he has to try to be nice to me! I am sure it will be taxing and stressful but I can't let my dad be at the nursing home any longer. I know they are short staffed and have a lot of residents to care for and he takes A LOT of time.

 

Now I know why I didn't go through my Master's program...this was coming! Deep breath! Sorry for the long post. I had to just get it out.

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I wish this hug was bigger, this doesn't begin to express how much I wish I could reach out to you, and help you, and thank you for doing this very, very hard thing ----> :grouphug:

 

God bless you and give you strength. May there be some unexpected joys and rewards along the way, and others to step in and help you when you most need help.

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Guest lacindad

:grouphug: I will be praying for you. I know how hard it is right now in your life. My mother died of ALS about 15 years ago. Just went through my father being to weak to move for the last several months of his life. I understand about waiting for medicaid and the nursing home situation. Please take time for yourself and don't worry to much about the schooling.

 

Long time lurker

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My dad is disabled with Primary Lateral Sclerosis. It is like ALS or Lou Gehrig's disease but instead of taking 3-5 years to die, it takes decades. He has had symptoms of it for 15 years and now his hands, arms, speech, swallowing, etc are becoming more severly affected. His speech is slow and low and his fine motor skills are totally gone. He couldn't cut cake with a fork the other day. He has been in a wheel chair for about 5-6 years. Until a few weeks ago, he lived independently...although he shouldn't have. He got very weak, went to the hospital for a week, then to the rehab for 10 days, home for 2...fell and back to the hospital. About a week ago, we put him in a nursing home for rehab (nothing really to rehab but he can't go home).

 

Well, he can't go to assisted living until he gets a Medicaid waiver to pay for the $4500 a month care. I have toured a handful of them and literally have been in tears thinking of putting my dad in a 8X10 room with 2 twin beds and a toilet in the corner with a curtain around it. All of the places that accept a Medicaid waiver are like this or they can't take his level of care which is maximum!

 

He called me this morning, crying and sobbing uncontrollably (emotional lability is part of the disease) because he said the aids are mean, won't take time to care for him, won't give him a wash cloth to wash his face, help put his teeth in, jam his legs into the wheel chair pedals, etc. He can barely sit up on the side of his bed, can't cut his food. etc!!!!!!

 

So, for lack of anything else to do with him....I am bringing him to my house. I could let him go home and pack up my 2 kids and their school work and bring it to his house every day but that isn't really feasible for me to do. (nor do I want to!) We have little DD's bedroom that has just been used as a playroom since she sleeps with me so I cleaned that all out. This evening we are going to get his hospital bed from his house. His friends are building a w/c ramp for the front of my house and we will make it through.

 

 

All great and well, except my dad is a cantankorous (sp) old man! He is grouchy, demanding, nothing anyone is going to do for him is going to be good enough...!!!!!!!! I did tell him he has to try to be nice to me! I am sure it will be taxing and stressful but I can't let my dad be at the nursing home any longer. I know they are short staffed and have a lot of residents to care for and he takes A LOT of time.

 

Now I know why I didn't go through my Master's program...this was coming! Deep breath! Sorry for the long post. I had to just get it out.

 

:grouphug:

You are doing the right thing. I wish I could bring my father back, cantankerous or not.

 

Get some ear plugs....and make sure you have Medicaid send in a nurse once a week so you can get a break. If you have any siblings, call on them for help....either shopping or helping with your kids....or giving you a night out.

 

Take good care of yourself while you take care of your dad. You are in my prayers...

Faithe

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:grouphug::grouphug: Bless you.

 

I help my friend out once a week as she cares for her disabled dad....it is oh-so draining and I'm watching her recede into fatigue and loneliness. I admire what she is doing....he is doing better at her house than he was at the nursing home but the burden and consequences are GREAT. She can't manage her house and family w/o help....good thing her dh is VERY successful and there is $ to pay her friends to help her. Her dad's $ is just about gone.

Just make sure you and your dh are on the same page and re-connect regularly as your dad's status may change and the expectations may need to be altered. Schedule and follow-through with time alone for yourself and your marriage....otherwise you may suffer a loss in those relationships as my friend is currently doing... it is hard. But, the knowledge that she has done the very best for her dad is a consolation.

Above all, get the support of your friends, family and church. God can give you the extra strength you will need. I'll be praying for you.

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Honey, you deserve a big hug! :grouphug:

 

My dad took care of his aunt who had ALS. It was a sad thing for me when my fierce, independent great aunt had to ask me to hold her enema bag for her. Even though I watched her deteriorate, I can't begin to imagine what it must have been like for her.

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I worked in a nursing home for several years. You're doing the right thing. I would never put my parent in one. It is a lot of work to have him in your home, so find out what kind of in home help you can get, make boundaries and tell him what they are. Do not budge on the boundaries. Your children are watching, so you can be assured that when your time comes you'll have a sweet little space to go to rest your weary bones. Children who see their parents carrying for a grandparent almost always repeat that same kind care. What a great lesson you are giving them.

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:grouphug: to you. My mother died of ALS. She never was in a nursing home since her breathing got worse quite early- I think she only had it for about 2 1/2 before she died. Anyway, lots of :grouphug::grouphug::grouphug: to you. Ear plugs do wonders as does putting music on headphones. That is what I sometimes do when things get to be too much. Hear some good music.

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Few things:

 

Find out what home care he may be entitled to, and arrange for it.

Find out what caregiver support groups are available for you, and access them.

 

I wish you the very, very best. :grouphug:

 

 

 

:iagree::iagree:Yes, yes, yes to the home care. Does he have Medicare? We cared for my mom in our home until her death last September. During that time she grew increasingly disabled because of (long story) medical issues, though not as severely as your father. We were able to have a home health nurse come at least once a week, a bath/shower aide, and we could have had a physical therapist if we'd wanted one. You also may be able to have someone come and do respite care for him so you can get a break.

 

You already know you have a hard road ahead, but I will echo what another poster said and say that you won't regret it. It is very, very physically and emotionally taxing, but you will not regret giving your father this care and attention, even though he may not show his appreciation. Still, he has medical issues that you will need help dealing with, so please find out what help you can get.

 

Also, don't be shy about letting others know what you're experiencing, and take any help that's offered - meals, babysitting, breaks, anything.

 

I can't send enough, but here are some :grouphug::grouphug::grouphug:

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Few things:

 

Find out what home care he may be entitled to, and arrange for it.

Find out what caregiver support groups are available for you, and access them.

 

I wish you the very, very best. :grouphug:

 

:iagree: Also, if your dad qualifies for caregiving hours, maybe you can see what it takes to become a caregiver and do it, so you would get compensated for some of your work. My sister is going to do that for my parents. Then maybe you could have some type of respite care come in for a few hours a time or two a week.

 

At any rate, I agree with the others, it's wonderful that you're willing to take him in and give him proper care! I'll add my hugs to the others you've been receiving :grouphug: :grouphug: :grouphug:, and my prayers for strength for you and your family!

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Few things:

 

Find out what home care he may be entitled to, and arrange for it.

Find out what caregiver support groups are available for you, and access them.

 

I wish you the very, very best. :grouphug:

I agree. Do you have any other family that can help you financially with his needs? We pulled our money together and got a companion for my mom during the day 3 days a week for a few hours while my dad is at work. This really takes a lot of stress off my dad, who is the primary caregiver and my sis, who lives nearby and is always "on call."

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Thank you all so much for the hugs and warm thoughts. I work every other Friday-Monday. I am very determined to NOT have my DH have to care for him (although he would in a heart beat, I don't want to impede on his already full schedule). The VA caseworker called me back today and approved home healthcare up to 2 hours a day for 4 days a week. That will help a lot. Once we get dad's schedule down on when he wants to get up and eat brunch we can schedule them to come in on the days I work to get him up, ready for the day, come back 3-5 hours later and feed him lunch (that I will make sure is ready) and then I will be home about 7:30PM for dinner/bed, etc.

 

I appreciate the boundries comments. I bought a bell today for him. I will tell him that unless he needs to use the commode (only for BM, he has a catheter) I will be unavailable for at least 3 hours during school time. I don't want to disrupt school for a drink of milk kind of thing. I did tell him already that he will be going to bed at a reasonable hour...not 3:30 AM. I don't do good with having to wake in the middle of the night and probably would do even worse for stupid little requests.

 

My living room is all rearranged to allow for his w/c. His room is set up with his bed, computer and bedside commode (he can't get in my bathroom so I had to buy a commode)...pink butterflies and all!:tongue_smilie: I texted him a picture. He likes it. He can't come home until Thursday now because the nursing home has to do a discharge assessment and can't get to it until then...dumb...but it's ok. The ramp isn't going to be done until tomorrow anyway.

 

We will see how it goes and the Lord will see me through it.

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Melissa :grouphug: :grouphug: . I know it's hard to be a caregiver for your parent. My dad had a stroke at age 45 and needed a lot of help. My heart really goes out to you.....but also to your dad. The poor guy must be so frustrated that his body won't do what he wants it to do. It's very sad. :crying:

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I did this for my mom when she had end stage dementia. She was confined to a wheelchair and could do nothing to care for herself. It was an extremely exhausting experience. I don't need to tell you that. It also is one of the biggest blessings I have ever had to give her such good care, happiness, love, and a wonderful last seven months on earth. Words can' express how glad I am that I did it all.

 

I really think you need to prepare for the future. Look at what you are going to need further down the road. I needed a sit stand machine for my mom as she was 100% dead weight. That machine was THE best thing. I can't recommend it enough. Medicaid should pay for it. We rented it for $200 per month and it was a LIFESAVER. This is what we used: http://www.just-patient-lifters.com/page4.html

 

If you can, get him a reclining wheelchair. I had to change my mom's position regularly to prevent pressure sores. An ounce of prevention is SO WORTH IT.

 

Block out the verbal abuse. It was hard and sometimes it was difficult, especially when mom was also physically abusive, (dementia.... It was NOT her!!!) but SO necessary. Sometimes I just had to laugh through it all or I would cry.

 

See if there is an adult daycare by you. Easter Seals has them as do some hospitals, and they even have buses for transportation.

:grouphug::grouphug::grouphug:You are doing a wonderful thing!!!

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