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rhiwoman

New member
Joined
Feb 11, 2009
Messages
8
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
OR
City
Portland
My mom has advanced ALS and I have learned that things can always get worse. I am not my mom's primary caregiver, in fact I don't do that much hands on stuff with her because I have a 3-year-old and a 9-month-old. I feed her when I'm around, buy her foods and drinks she likes, take care of phone calls, just some little things. I do however have power of attorney for mom, my learning disabled father and my Grandmother (mom's mother). I handle my parents and grandma's financial affairs and oversee their medical care. I moved from out of state with my family in July to be near my parents and help them. I spend two days a week with mom doing whatever I can while caring for my two kids. Fortunately I think the kids help her a lot as well. I'm also trying to finish my degree, I'm suppose to be a fulltime student but never have much time to work.

The problem is that I feel like a candle that is burning from both ends. This summer I said to myself that I could handle this for a few months and just had to keep going. After all no one expected Mom to live until Fall so I gave it my all. Now I'm continuing to give it my all but Mom is much worse, my grandmother is having hallucinations and calling me in the middle of the night, and my three year old is possibly seriously ill and I can't let mom find out. I feel like I am not doing my part for my children or any of the three adults that I am suppose to be caring for.

A friend of mine, realizing my frustration, bought me a book for caregivers. In the section on ALS it suggests euthanasia as a good way to deal with ALS. This breaks my heart because I talked my mom out of "death with dignity" back in May. She has had so many good times since then and I have moral issues with choosing your own time. Especially knowing that mom would choose to die earlier than she wanted in order to "make life easier" for those who are caring for her. But now that Mom can only slightly turn her head, has trouble keeping her eyes open, is completely paralyzed below her shoulders and is losing her ability to speak I feel like it is my fault that she is stuck with this life in a dead body. When she stuggles to cough or slowly form words I think that she would be at peace if it weren't for me selfishly wanting her to stay around for the rest of her natural life.

I think the last straw was when we tried respite care last weekend. My dad is primary caregiver and he wanted to go away for a few days. Hospice placed her in a care facility and it was a nightmare. They didn't think to support her head when they transferred her, they tried to give her oxygen against doctors orders, they forced her to use a bedpan instead of being troubled with putting her on a toilet, they overmedicated her so that she couldn't open her eyes, skipped her shower since it was too much work too bathe a paralyzed woman, and they wouldn't listen to her when she was telling them about her needs. I stayed with her two of her three days there and felt horrible leaving her at night. The second night she called for help for 40 minutes before someone would come suction her. She can't use a call button of any sort. I had always imagined that if her care got too difficult for my family that we could find a facility where they could provide the essentials (bathing help, feeding help, transfers for toileting, etc.) and we could camp out there to keep her company. Now I see that they can't take care of her at all. Mom is not going to be able to use her current lift much longer but it took 4 people to transfer her at the care facility with the Hoyer. How on earth can we have 4 people at home at all times to care for her? It is hard enough now, we try to have 2 people there most of the time.

The last few months have showed me that just when you think you have reached an all time low things can get worse. But I am stretched to the max, constantly exhausted and feeling that I am letting everyone down. How can I keep going like this? And what is the alternative? I can't exactly tell either of my kids, my parents or my grandma to just take care of themselves. I keep praying for strength but I can feel myself unraveling. Thanks for listening, I know I shouldn't complain because I am only helping from the sidelines but I only have time to wash, feed, clothe and care for so many bodies each day.
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
This must be so dificult for you, sometimes I feel so stretched and I dont have any kids or anybody else to look after. This is the most horrific disease I believe that exists, and we just dont know when it will end. Like yourself I dont believe in Eutinasia, and thought a few times that my mother was at the end stages, but then carries on. In October we were told by doctors that she wouldnt last the weekend, she is still fighting today, thankfully she can walk slightly but with help, talk slowly and understandably and she can hold her head up, her breathing is bad, and she is too far gone for peg or trach so the choking is bad also. Most days Im soo glad she is here, but she is starting to say that she wants this to end soon, that she wants God to take her and stop making her worse, Its hard for me to pray for this, but they are her wishes.
I understand about how you feel on Eutinasia, I have the same beliefs, and I do think when her time comes it will be easier for you, than if you had chosen this option. I know what you are saying about the help, I am the primary care giver, and I hate to leave my mam with anyone else, my sisters stay and she goes with friends the odd time, but i just know they dont do things the way I do, and when I come back mam says, I do miss you, they dont look after me the same. That doesnt help with the guilt!

I havent got any real words of advice, This must be so hard for you. But you are in my thoughts and prayers and I hope God will give you strength to help you be there for all your family.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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Other
Country
HM
rhiwoman,

What about hospice care in the home? And have you contacted the ALS Association or your local ALS Clinic? They should be able to direct you to a recommended hospice company that can come into your mom's home. Sometimes the ALSA have volunteers that can help out. Oh, and don't forget the MDA. They may also be able to give you direction.

As mndireland has said, this must be very difficult for you, but you also have an obligation to your children.

I hope you can find some help. That sure is a lot to be taking care of.
 

rhiwoman

New member
Joined
Feb 11, 2009
Messages
8
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
OR
City
Portland
My mom is enrolled in a hospice program. They provide bathing assistance at home (but only one person, she needs two helpers to bathe), a weekly nusring visit, accupuncture, meds, etc. Hospice is also responsible for the horrible respite facility, they made arrangements and we assumed they would pick a qualified center. Hospice doesn't provide the day to day though. They don't help with toileting, transferring patients, feeding, paying bills, or providing night care. They give us suggestions on caring for mom but they don't seem to know what to do about the problem with using the Hoyer lift for example. The nurse helped us transfer with it once and basically said "oh yeah, that doesn't work very well, I guess you just need more people to do it". They provide support but in the end we are the ones who have to figure out a solution.

My parents pay caregivers to come in 3 days a week, that is all they can afford. My parents don't have much but just enough that they can't get in home care paid for given that they are not seniors (they own a house essentially). My dad can't afford to spend everything on mom, he is 59, in a very physical job and on the verge of needing to retire. Cognitive limitations will prevent him from getting a less physical job, he can't write, can read very little and can't do math. MDA helped with getting my mom's wheelchair (God bless them!). Hospice will send volunteers but they aren't allowed to do most of the everyday things for mom- suctioning, giving drugs, transferring, etc. Not too mention that even now mom is resistant to any new caregivers and the experiences of last weekend certainly didn't help on that front. The ALS association has meetings that no one in my family has time to attend and suggestions on hiring care givers that we can't even imagine affording.
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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Country
HM
unbelieveable! Sorry! I don't know how to help you girl!

You and your Mom are in my thoughts!
 

northerngirl

Distinguished member
Joined
Jan 9, 2008
Messages
106
Reason
Lost a loved one
Diagnosis
11/2007
Country
CA
State
BC
City
Kootenay
rhiwomen,

Wow, You have a lot on your plate. We got live in care giver for mom, I was happy it was only $240 a day, but she needed some one 7 days a week.It is expensive. Dad could not deal with it. The care facility, with the change of staff, some were great and some sucked huge! The 40 minute till suction, for your mom it the kind of crap that pisses me right off!

I know you are swamped, I have been there the kids, the help, the nurses, the doctors, the equipment the list goes on and on. When I hear your story I worry about you but also your Dad. It is so important he keeps his sanity too. If he can't deal with it,
Your going to be more stressed out.

I know the feeling of praying your Mom will live, then find your self praying she can have peace. Don't second guess your self. You have been making great decisions, and have been doing an amazing job.

I know it's hard, and i know there is not enough time in the day, and you may think it is easy for me to say, but, look after your self first. With out you it will be harder for them. They will manage, not how you would want, but man kind does. Try and find 20 minute or half an hour to go for a brisk walk, and have some "you" time while you do it. It will help you with the stress in so many ways.

Come back here to blow some steam. These folks will help make suggestions. I know what's available in BC Canada, but not down there.

Hang in Kid, you've done great,
Hugs Laurie
 

Why my Dad

New member
Joined
Nov 12, 2009
Messages
7
Diagnosis
10/2009
Country
CA
State
Ontario
City
Niagara Falls
Oh boy....I live with my Dad. He is 82 and was diagnosed with ALS on Oct 7/09 but his walking, talking and swallowing have gradually become worse over the past 4 years. Since being diagnosed, he is now unable to use his walker anymore and isn't able to dress himself. I have been watching the food he eats - cutting it up small and watching the texture but sometimes he chokes on his coffee - saying it went down the wrong way. The neuologist told him that he will eventually get pnemonia and that is what most people with this illness pass away from - so now he gets very anxious when he isn't able to cough up mucous all the time. I have been living with my Dad for almost 8 years as I my boyfriend and I moved in to help take care of my Mom when she was diagnosed with cancer. Mom passed away in Oct/06 and was at home until the end. Last year...we had my older brother move in with us. He was suffering from end stage liver disease. He just passed away this past March. Soon after my brother passed away, Dad had to have a permanent catheter put in as his bladder wasn't working anymore. Since being diagnosed with ALS, I notice a change in him from week to week - he is losing more strength all the time.

I am 56 years old - and after reading rhiwoman's story...I am pretty scared of what the future holds. Although I'm not working right now - I am getting unemployment for now. It isn't much but I can't look for work now as Dad can't be left alone. He lays on his bed most of the time but he still has some mobility and can still feed himself. I promised him and my Mom that I would never put them in a home and after reading what has been written here...that is definitely not an option. I don't know how rhiwoman is able to care for her 2 small children and do what she can for her Mom on top of it.

It is a horrible thing to think about...and I can't believe I am even saying it - but I pray that my Dad gets pnemonia before he goes through the whole degeneration process I am reading about. This is not out of selfishness on my part - I can't bear to think of my Dad laying there only able to open his eyes! I am so, so sorry to hear how people are suffering..not only those who have this horrible disease but everyone who is affected by it. Dad has had a good life - and he is 82 years old where there are so many others who have not lived their lives out yet. It just isn't fair - and it is just wrong!

I don't know what to say...just know that I understand how hard it must be for all of you and my heart breaks for everyone who is suffering from this terrible illness. My thoughts and prayers are with you. Take care,

Dianne
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
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Country
HM
Thank you Dianne.

and thank you for caring for your dear father.
 

indigosd

Very helpful member
Joined
Jun 22, 2009
Messages
1,784
Reason
Lost a loved one
Diagnosis
07/2009
Country
oz
State
oz
City
RURAL
Oh, this is so horrid! You need to report the Nursing Home ASAP! I so wish that I had some real advice to assist you. Have you contacted your State agency's to see if there is any assistance for in home care? My heart goes out to you. Keep asking for help from everyone! Try to find a moment to spend some time taking care of you if you can. Diane, you have had a lot on your plate. I am sending you all virtual hugs and hope that today is smooth and everyone gets a little well deserved rest.
 

Twinsmom

Senior member
Joined
Sep 2, 2009
Messages
604
Diagnosis
07/2009
Country
US
State
FL
City
Miami
omg...I read these, and my heart breaks. For the PALS, the family members/caregivers...it all is just so horrible. You are all amazing examples of grace and courage.

All I know, is what they tell every "caregiver"...if you don't take time to take care of yourself, you can't take care of others. It sounds great in theory, and I'm sure not the poster girl for how to do that, but I'm trying to do one thing...that's just MINE each day.

Prayers for continued courage and grace.
 
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