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dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
I need help from you caregivers. My mom is the caregiver for my dad. He has been diagnosed with ALS for the last 18 months. He was sent home on a ventilator last month and my mom has been his primary caregiver as her insurance does not cover private nursing care. She is so burned out. She cries every day. She tells me she is failing us and him. I've tried to get her to talk here, but I think she's afraid. I live 2 hours away and have been trying to visit weekly to give her a break, but my breaks are minor because of a lack of vent training. What can I do to give her more support? It breaks my heart to hear her suffering. Kim
 

sharonca

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Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Kim - does your mother have friends or family that could come in and do chores around the house to free her up for only helping your dad? There is a book - Share the Care - that lots of pALS and cALS have used to help lighten the load. Perhaps you could have her train you to help with the vent issue. Is your family signed up with ALSA and MDA? Perhaps you could find some help there. I know others on this site will have suggestions for you.

Sharonca
 

Jeannie

Distinguished member
Joined
Dec 19, 2007
Messages
222
Reason
Loved one DX
Diagnosis
01/2008
Country
US
State
NJ
City
Vernon
Dear Kim,
I am so sorry that your mom is stuggling. I am sure she is doing a fabulous job and it is taking a huge toll on her. She needs to take care of herself so she dosent fall ill. Does she belong to a church, sometimes they have people that will volunteer to come in and help. If there are friends local I am sure they would be willing to help they just need to be asked. Sometimes people feel funny comming over to help as they don't want to indrude or overstep but once they are asked they feel great to be able to help. I know my mother in laws friends told me to just ask them and they will do whatever.
I hope that your mom can find some help. Isn't insurance terrible that some won't cover a home health aide?
I hope this helps.
In Friendship
Jeannie
 

dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
Sharonca
We do belong to ALSA. They have been an amazing help. If only the health insurance could do their job! As for asking for help, my mom is claustrophobic and being forced to stay close to the house with no escape except when one of us visits is very hard on her. She has been getting better about asking friends to help with the dogs, but seems to feel that personal trips like grocery shopping should be her responsibility. I'll see if I can find the book you suggested and get that to her. Kim
 

dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
Jeannie
It was interesting that you brought up church. I've been trying to find a way to get her to be allowed to go to church one Sunday. I live 2 hours away and have not been fully trained on the trach yet though I tried to do so locally. Apparently only the ventilator company is really allowed to officially train. I get what I can from my mom during my visits. Between my siblings and myself, we continue to try to work something out. Kim
 

capnhook

New member
Joined
Jun 9, 2008
Messages
1
Reason
CALS
Diagnosis
01/2007
Country
US
State
Oregon
City
Springfield
Hi Kim,

I am in the same place that your mom is in. I can sympathize with how both your mom and you must feel. She might have a tendency to think that she has to be perfect in her care of your dad because "it is her job to take care of him." Because of this, she may feel that she has to be Superwoman and not ask for help.

You do not say how old you mom and dad are. If they are over 55, they may be able to get help from organizations that provide help to Senior and Disabled persons. Also as mentioned above, is your mom and dad involved with the ALS Association (ALSA) and the MDA Clinic in your area? Since your mom is the primary care giver, insurance may provide counseling for her, which can help with the burnout that it appears she is experiencing.

Your mom is already going through the stages of grief, and is probably scared, because of all that has already been lost and the loss that is ahead, with all of the uncertainty (Future with your dad, financial matters, legal matters, and etc.). And even though your dad may be a good hearted person, he is going through a very scary time, with much anger and frustration, and he may inadvertantly be putting additional pressure on your mom.

Check out the following websites and encourage your mom to do the same:

http://www.als-mda.org

http://www.alsa.org

http://www.thefamilycaregiver.org

They have some information and help for the caregiver.

In addition, try to get her to understand that she can not fix the problems that your dad is having. As the primary caregiver, she needs to maintain her health or she will not be able to continue to provide the care that your dad needs. she needs to learn to ask for help and delegate any work that she may normally do onto anyone that will help. This is not limited to the care of your dad, but also to any household chores that she can get help with but any chores that she might do such as cooking, cleaning, yard work, and any other tasks she can delegate.

The book "Share The Care" mentioned above is an excellent resource that both she and you could read.

Hang in there and take good care of your mom, because she is going to need it.

Rich AKA capnhook
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
Hi Kim

Hi Jeannie:

Sorry about your mother, believe me I know what she's going through, let me tell you
that it is very important that she get's training about the use of the ventilator, how to do the suctioning, etc. etc.

At the beginning she may feel she can't do it, but believe me we CALS do learn, I spent six month's at the hospital with my husband, and there were times when the technician did not come on one of the shifts, my husband had to be nebulized on three shifts, and suctioned whenever he needed it, and some of the nurses, didn't have enough experience or didn't like doing this, one of the technicians showed me all the procedures, and at first my husband refused me doing it, but later he only wanted to be suctioned by me. I thank God for all I learned there because once the the ventilator stopped working and I had to get the ambulatory don't know how you say that in English, it looks like an American Football ballon, and get air into his lungs, till the machine was changed, I stayed for 30 minutes pumping air into his trachea.

Does your dad have a PEG? That is something else I learned to do, to feed him myself and to wash the tube thereafter.

The book that Sharonca is suggesting will help her a lot, me at the beginning the two years I spent at home taking care of him by myself, only going out to do the groceries, living him home alone (using a Urinary cathether, so he wouldn't have to wait for my return if he felt the urge) worned me out, my back suffered a lot, my husband was tall and I am petite, at that time my husband couldn't move, talk, everything that comes with this horrible sickness, we communicated through an alphabet and with eye signs,
I fed him, bathe him with my son's help, shaved him, and sat him on a commode, at home he never used diapers, I managed to pull him from his hospital bed to the commode using his nylon pajamas so that he wouldn't stick to the bed sheets.

I am sorry to extend so much on this, but your mother should be able to ask for help from friends, family or church friends to help her with house chores, and with the dogs, I
had at that time three German Shepherds.

I hope she decides to come to the forums, here we can vent, make friends and we don't feel lonely.

I hope I could be of help, feel free to send a private message or e.mail me whenever
you need to vent, or ask questions, my e.mail is [email protected]


Paty
Baja California, Mexico
Cals to late husband Jorge
Dx 10/17/05
Died 20/12/07

P.D. EVERYBODY HERE IS WONDERFUL
 

sharonca

Distinguished member
Joined
Nov 27, 2007
Messages
423
Reason
PALS
Diagnosis
12/2007
Country
US
State
CA
City
Mentone
Jeanie - the web site for Share the Care is sharethecare.org. It is very helpful until you can get the book. What I like most about setting up a group is that I would not be the one calling and asking - the coordinators would. And then people feel more free to say no when they can't. No guilt. No hesitation to ask on my part.

Sharonca
 
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