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lisamk

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Hi, I am new to this board and I am desperately searching for some advice as to how to help my mother. My father was diagnosed with ALS in 1998. My mother is his caregiver and it is getting to a point where it is is physically and emotionally taking it's toll on her to the point where I am worried she could have a nervous breakdown. He is now in a wheelchair permanently, can no longer to lift his arms so he must be fed by someone, bathed and assisted with bathroom, along with all of the other aspects that go along with caregiving.

I live less than a mile from her and we see them if not daily, then every other day. My father has a power wheelchair so when the weather is nice, he can drive up to my house. He can be left alone for a few house after he is fed and gone to the bathroom because he can't do anything but sit in the chair. He doesn't mind and I think he likes some alone time so my mother is able to go out to an evening BINGO a few nights a week to get a break. She can even go shopping and leave him so I am no help from that aspect. She recently had a little breakdown and her doctor told her the family has to start helping more. The problem is that none of us, including my mother know what we can do to help her. We are all willing and able to make any necessary sacrafices, but I just am at a loss here. What I think is going on is that she is getting burned out with the day to day tasks of caregiving. It's such a horrible disease and it's so frustrating to do so much for someone day in and day out and know that they are not going to get better. That fact, coupled with the fear of what is to come is very scary. We know that it is just going to get worse. She is not going to be able to care for him much longer, but he refuses to talk about the next steps. I know shy lays awake worrying about everything. My husband and I and my brother are willing to do whatever we can. I would love to send her away for a day or even a weekend, but we have a problem with the bathing and bathroom part of the caregiving. I would do it if I had to, although I think the embarassment for him would probably kill him. I try to feed him meals when we are there for dinner to give her a break. Aside from cooking dinners and keeping them busy with his grandkids (I have 3 year old twins and a 2 year old), I just don't know what I can do to relieve her. I know that they have respite care, but my father is not very receptive to the idea. They have always had a very good marriage, but the past several years, he has been downright abusive to her. I know it is out of frustration and I can't even imagine what he is going through. He can't even scratch an itch if he needs to! This disease infuriates me.

It's taking it's toll on her. It seems like when we focus on taking care of my mother, he gets irritated and any disruption in the harmony really sends her off the deep end. She just can't handle any kind of stress anymore. It's almost as if my father doesn't really understand all of the demands this disease has placed on her or maybe he doesn't want to admit how bad he is at this point. I don't want to talk badly about him or make him seem like a bad person in any way. I grew up in a very loving household but this disease has really brought out the worst in him. She is now in charge of every responsibility that goes along with running a household, being a grandparent AND a caregiver and he is constantly placing new demands on her and watching her every move. We have all tried to get him out more often and get him involved in various activities, but he is not interested in doing anything without my mother, which doesn't give her any relief. I am very worried about her. Any suggestions would be greatly appreciated.

What I really want to know is what would help YOU as a caregiver. If you could just start delegating responsibility or make a wish list, what would it be? With mother's day and her birthday fast approaching, I really want to do something special for her. Not even just those particular days, I want to know what I can do to relieve some of the stress.
 

brooksea

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Hey Lisa!

Sorry about your Dad. And sorry your Mom is in such need of relief!

Great idea to make this a Mother's Day of birthday gift. Sounds like you may have to just take matters into your own hands with your brother's help.

Does she have contact with any dear friends or has her social life been very limited? (Oh, I see in your post she palys Bingo) If she has a close friend, it might be nice to arrange for the friend to come pick her up for a very special outing that involves some sort of pampering, just the two of them. Then perhaps both your brother and you can sit down with your Dad and make a plan that involves relieving your mother. Whether this be Hospice or y'all that would be his choice (and no other choice, i.e. your Mom).

Your Mom's mental and physical health must be maintained in order for her to care for your Dad. I would approach him from this angle. She has to have a break. Maybe start out one day a week for her and then increase a bit at a time til he gets used to Hospice or y'all coming in.

I'm sure she feels like she is in a hopeless situation and is frozen with fear and anxiety. Presenting this as a gift to her, as you suggested, will make it easier for her to accept and hopefully she will not feel guilty taking advantage of the offer.

One last thing, has her doc prescribed her any anti-depressants? Sounds like she could benefit from them (and your Dad too!).

I'm sure others will be able to give you some ideas and input. Again, welcome.
 

hopingforthebest

Distinguished member
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Feb 20, 2007
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355
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02/2007
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NJ
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Mays Landing
Dear Lisa

I am a caregiver to my husband and have two adult married sons and two grand babies.

We have only battled this disease since November but he is progressing quickly and breathing problems a big issue.

My husband is wonderful but is not receptive about anyone bathing him, etc. except for me but we are considering a Hospice interview and I am told they are very helpful with these issues. Yesterday our ALS medical director told us some patients live 2 years while on hospice and are so grateful for their services.

This is what I suggest for mothers day: Have your brother stay with Dad, and take Mom and "yourself" for a spa day and leave those precious toddlers with their Daddy.
If I had a daughter, I would love that! I will pray that Mom will be open to it.
Honey, don't feel guilty. You are doing the best you can. Your job is taking care of your precious babies. Mom needs help from Hospice with Dad.

Will pray for you!

Patty
 

lisamk

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08/1998
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PA
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Thank you very much for the suggestions. They have actually had hospice in the past year and 1/2, but had to temporarily cancel 7 months ago. Their insurance will not pay for a new power wheelchair while they are on hospice?! So - they went off of hospice to tried to get a new wheelchair and this ordeal has been dragging on for 7 LONG months. Everyone you can imagine is involved from the insurance company to primary care doctor, neurologist, wheelchair company and they make it VERY DIFFICULT to get anything done. I actually asked my mother how much a new wheelchair is b/c I am considering getting a loan and getting the darn thing myself. They make the people who need the most, jump through the most hoops.

Hospice was coming in for 1 hour 3x/week and it was wonderful for her. They would usually come to feed him lunch and just talk with him. Just having a new face to break up the day was very helpful for them. Originally, they thought they would go off hospice for a month, get the new chair and go back on it, but like I said--it's dragging on and on (that's a whole other story in itself!). I think once they get this resolved and can get some help from hospice again, it will help.

The past couple of years I have arranged for her to have 'spa days' with pampering for mother's day and her b-day and she really enjoyed it. We even paid to have a hospice nurse spend an entire day with him at the house (feeding lunch, dinner and bathing him) He was OK with this the day of, but it seems like if he knows in advance, he is very moody and uncooperative in days leading up. I think it makes him feel like he is a burden and she needs to get away from HIM and he goes on the defensive. I have talked with him til I am blue in the face to try to explain this is not the case and so has my mother, it just seems like there is no reasoning. It's funny b/c after he was diagnosed,we didn't know if he would even be around for a few years. Although coping with the diagnosis was one of the hardest things I have ever done, we shared more laughs in the those first years than I can remember in my whole life, it's just been the past 2 years where he has been very difficult and I know it's probably b/c he is angry and frustrated, but it makes it very difficult on everyone trying to keep the peace and be strong.

I really think they both could benefit from antidepressants also, but unfortunately, they are both opposed to it. They are the type to not even take an aspirin if they have a headache so there is no talking them into it. We actually were going to give the antidepressants unknowingly to him b/c things were very bad for awhile, but my mother felt too guilty about it. (If it were me, I think I would have tried).

I guess it's just par for the course for this horrendous disease. It's a very cruel disease. It's very hard to see every ounce of someone's independence taken away bit by bit. He can't do anything anymore and it's VERY difficult to understand him as his speech is very bad at this point. All of these things make it very hard to cope with on a day to day basis.

I appreciate the suggestions and if there are any others out there, please send them my way.
 

kelly

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Hello

Dear Lisa,
I am a caregiver for my 41 year old husband. I can totally understand everything you and your Mother are going through. I feel so guilty when I leave my husband for any length of time. But, I know that for my own mental well being it is so important. Sounds like you are doing all the right things as far as arranging for her to get out, and provide coverage. When I read about the wheelchair I automatically thought of your local ALS center. We have borrowed a scooter and a walker from their loan closet. I think you should check it out instead of spending your own money. I also laughed when you said that their are alot of laughs through all the turmoil. It is really true. My husband is angry at the world, and I am having to really encourage him to "live"! Just wanted to let you know that I could really relate to this post.
ps-we lived in the burgh for 5 years...miss it!
Fondly, KR
 

CindyM

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This is a great thread! I'm sure all caregivers can relate and I think it is great how you guys jumped in to try to help Lisa. Lisa, please keep us informed on what you decide and how it works out! Cindy
 

lisamk

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May 2, 2008
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08/1998
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PA
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Pittsburgh
Kelly, I am so sorry about your husband, and for ALL of you out there who are dealing with this as a spouse, relative or loved one. There really are no words to describe the emotional rollercoaster of coping with this disease. My heart especially breaks when I hear about young people. 41 is so young to be dealing with something like this. My father was 54 and was months away from retiring. You work your whole life for that day. They paid off their house and he retired and was formally diagnosed with ALS. My world was turned upside down. I had just got married and lived in AZ and the first thing I did was get a transfer back home. We bought a house less than a mile from my parents b/c we didn't know how bad things were going to get and how quickly. Fortunately his has progressed slowly. It started with his speech being kind of slurred, progressed to the limbs and we watched him go from singing his silly opera music and doing the Dr. Pepper dance through the house to not being able to barely speak and transitioning from a cane to a walker, then a lift chair and ultimately to the wheelchair where he sits probably 15 hours a day.

Which brings me to the wheelchair issue. He actually has a very expensive wheelchair that does all kinds of fancy things that the insurance company paid for when he was diagnosed, the only problem is that it is too big to maneuver through their rooms without banging into everything and more importantly, it's very uncomfortable for him. He also has a scooter which my aunt lent to him (he still uses on ocassion, but has a very hard time steering it b/c of he can barely move his arms, still...he insists on using it on ocassion for a change of pace) and a very cushiony jazzy pride electric wheelchair which he loves. Nothing fancy, just a very basic model that does nothing but moves. However, it is REALLY worn, it has more patches on it than I care to mention. So the wheelchair isn't an issue so much b/c he needs one that he doesn't have, it comes more down to a comfort issue. It's hard to explain this to the insurance company. Like my mother says, they aren't LIVING it. This many LIVES in this wheelchair and it is imperitive that he is comfortable. She has actually spoke with the ALS Assoc, but nothing is resolved yet. I guess the point is that...why must everything be so difficult?! They are hell bent on getting a new chair b/c they have paid expensive insurance premiums their whole lives and been totally healthy so they feel entitled and I agree with them, but I just don't think it's worth all of the stress and aggravation.

My mother is really opposed to utilizing a support group of any kind. I don't know why, I use them for everything and they have been a God send for me. I was on one when my father was diagnosed to help me cope, when I was dealing with infertility and now even one for people with pets with cancer b/c my little furbaby was recently diagnosed with lymphoma and is undergoing chemo. And here I am again looking for answers with this awful illness.

Anyways, I was wondering if any of you have been active in your local ALS Associations and if they have helped you and in what way.

Kelly - where did you live when you were in Pittsburgh?
 

kelly

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saturday

Hi Lisa,
Sounds like you are an amazing daughter to move close to home and be available for the roller coaster ride. I have gone to the ALS center for one support group meeting. It was definitely helpful..but of course the minute I started talking I cried. I promised myself I would not allow it ...but still cried. Not that I do not cry...but it is usually with my close friends. Anyways, It was kind of hard for me to relate because I was the only one with small children. The nurses are so helpful...trying to help find any adaptive tool, or equiptment that will make like easier for the caregiver or patient. We lived in Cranberry twnship..and I worked at the Children's institute while in the Burgh.
Today was an exciting day...we traveled 5 hours up and 5 back to buy my husband a recumbent trike. He looked so happy being able to power it byhimself. So...long day, but well worth it.
Take care..and hang tough. Fondly, kelly
 

lisamk

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May 2, 2008
Messages
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Loved one DX
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08/1998
Country
US
State
PA
City
Pittsburgh
Kelly, how old are your children? I am so sorry you have to deal with this at this stage in your life, it's so unfair. What is an incumbent trike?

Cranberry is such a nice area, but it's been so built up the past few years. Not sure the last time you have been in town, but traffic is getting pretty bad out that way due to all of the growth. I live in the Robinson Twp area near the airport.

I have always been very close to my family so there really wasn't a second thought moving home. I hope you have help from other family members and friends as well. Coping with the emotional as well as physical aspects of this disease is an unbelievable chore and I can't imagine having to go through it with small children.
 
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