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lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
Does anyone have any tips on how to get my parents to finally just give in and accept homecare or hospice?
It's been close to two years and they have pushed away many friends and family with their inability to give in and accept outside professional assistance. Many of the friends and family who were initially helping in the beginning have reached their limits and understandably no longer want to help those who won't reach out and help themselves.
I am frustrated today because TODAY, I had to do something that I've dreaded coming.. my Dad needed to use the bathroom, which to this point, I have brought him INTO the bathroom (pretty much daily for the past year) so that he could use it, but today, I had to actually insert something into the 'pot' so to speak, so that he could relieve himself. I understand how frustrating and hard this is for him/ them; but personally this is my limit and I never want to have to do this particular 'thing' for my Dad. This, to me, is my limit and is too too much to ask from me.
I have reached and surpassed many limits and obstacles already with assisting him that I never thought I would overcome before, but this one is too personal for me and I don't want to see THIS part of Dad (I'm his daughter). This one is just too personal, too emotional, and feels WAY BEYOND too much to ask from me. I know to this point I have enabled them to go without hospice, being there for them when they need me, etc.. how do I give up the guilt of 'being there for them', take back my life, and make them get help? I'm sorry if this sounds selfish, I'm just done with living up to 'too high' expectations. I need to deal with this too..
Any suggestions?
Thanks, love to you all...
 

Micheline

Active member
Joined
Sep 23, 2008
Messages
80
Reason
PALS
Diagnosis
11/2008
Country
CA
State
British Columbia
City
Campbell River
Hello, I'm the opposite of your parents. I do not want my husband and teenage children to help with personal care. But I am also stubborn and try to do it all on my own. We will be having homecare come in once a day, for now. My husband has to go away for 2 wks for work so I want to have everything in place before he goes. I know he'll worry, bless his heart. But I know I need it.

Thi may be easier said than done, but have home care come and discuss what they help with and have them say to your parents that it is their job to do "those" kind of things and that the family may not want to do those things out of respect. And how hard it will be as a child (even grown children) to do certian things. This may not be the best advise, but what I feel as a PALS.

Micheline
 

mndireland

Distinguished member
Joined
May 17, 2008
Messages
123
Reason
Loved one DX
Diagnosis
10/2007
Country
IE
State
Ireland
City
Dublin
Hi Lola, I have been in the same boat, at first allowing my mum to have her wish of no outside help, then getting to the point where I need help! At first I introduced homehelp, she just comes round for an hour twice a week, and she mainly cleans up, changing beds etc. I told mum I couldnt bring her out or do fun stuff as I spent all my time cleaning and cooking, so the help was for me and not her. This worked, and a year later, she enjoys her cuppa with Dolores (homehelp) and their chats. I am now 7months pregnant, primary carer and really struggling to keep things going. I have to lift mum all day in and out of her chair, she still has some stability so its not completely lifting. I have told her that my back is really sore, and if I put my back out the hospital could keep my in until my due date, 11weeks away! Then what would happen, it was a scare and a little cruel, but we are now hoping to have a nurse, helping to wash and dress her, and get her in and out of bed.

I know it does sound like she's being forced into things she doesnt want, but to be honest its been like that since the beginning. She didnt want the wheelchair, then I just refused to take her out without it as it was soo difficult, she refused bi pap until it came that she actually couldnt breathe. She has fought everything since the beginning..... but eventually has had to accept them. They say its cruel to be kind!

So, what Im saying is to tell them the truth. You cant do it anymore, tell them you cant keep doing what your doing, your physically exhausted and making yourself sick, and what you need is just a little help for you and not for them. They might see then whats happening.
I couldnt cut my mums toe nails, it was actually making me gag. So now I pay a beautician to come round and give her a manicure and pedicure every 6 weeks! She thinks its a treat. Cheap trick, but again it works!

Hope this helps a little....
 

lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
thank you, both of your responses are very helpful..

I think it would be interesting to start a thread to see just what each person's personal limits are/ were, and then to see how we surpass them and surprise ourselves, only to make previously apparent 'obstacles' turn into an everyday routine..

I'm sure it's common consensus here that we'll do anything for those we love! And that ALS/ MND has already stretched our boundaries and made each of us stronger than we ever thought we'd have to be!

I think posting something like this would make us each reflect at what we once thought were our past 'weaknesses' and how we made them more acceptable, doable, normal even... I think reflecting on what we've already each accomplished (both mentally, physically, as PALS and CALS) that it might give us even just a little bit of strength within ourselves to accomplish that next new obstacle that's looming just around the bend!

Thank you again for your responses.. always interested in hearing any more that you might have!
 

shannonme

Active member
Joined
Dec 14, 2006
Messages
34
Reason
CALS
Country
US
State
OR
City
Portland
Oh boy- I can relate. I "managed" things for my mom that we would have never thought possible. But it is what is. The decision to change her living situation came out of necessity. I could no longer get her into the upstairs shower and couldn't afford to remodel my home. She qualified for Medcaid and we found a care facility that she found to be acceptable. The guilt never did go away. But we are only human. I know I did the best I could for her, I hope she felt the same way.
Mom passed away on Sept. 21, 2009 two years after her diagnosis.
 

RevRoyKibodeaux

New member
Joined
Feb 24, 2009
Messages
3
Reason
PALS
Diagnosis
06/2008
Country
US
State
Florida
City
Orange Park
RE : accepting homecare?

I am silent about this.
 

hopingforthebest

Distinguished member
Joined
Feb 20, 2007
Messages
355
Diagnosis
02/2007
Country
US
State
NJ
City
Mays Landing
homecare/hospice

Dear Lola:

My husband has no use of his arms/hands at all. Hospice was initiated in May 08 for care needs only as he has PMA, which is a variant of ALS but much slower progressing.

Anyway, when his MD suggested hospice he presented it to my husband as "help for your wife". The first day that the aid came and walked him to the shower, he said it was the most embarassing day of his life. (I cried the entire time, without him knowing, that she was in there with him) The aid told him it is a "carre issue" and she is a professional. From that day forward, he has been fine. They come 7 days a week for we are so grateful.

Sometimes, I believe, it is a pride issue with patients and caregivers. They do not want to admit, to outsiders (friends, family etc.) that they need help. That, I feel, is an extremely selfish attitude.

You are a wonderful, caring loving daughter and I agree that some issues need professional help. Have someone from hospice come out and speak to your father on an evaluation visit. Let him think about it for a few days.

I will pray for good results! Let us know.

Patty:grin:
 

overourheads

New member
Joined
Mar 2, 2009
Messages
1
Reason
Loved one DX
Diagnosis
11/2005
Country
US
State
michigan
City
marysville
Wish I had the answer:)

Wish I had the answer lola, I too am in the same boat with you. My dad was diagnosed in '05 and my mother refuses to come to the understanding that we need help- friends and family have fallen away and my dad is extremely controlling of who sees him. My husband and I have two children and work 100hrs a week- we go over 5 nights a week and prepare him for bed and 5 days a week we deliver food and feed him.- God love my husband he takes on most of the work- he can lift him alone and he has a stronger stomach for some of the needs- bottom line niether one of us have medical experience. I have 3 other siblings who do not live in the state which puts alot of pressure on me and my husband. Its very difficult and its getting worse. I love spending the time with my dad but its turning into all care and no quality time:( Also trying to find anyone to help at night is impossible.
 

Bujy

Active member
Joined
Sep 22, 2007
Messages
33
Reason
Loved one DX
Diagnosis
Family
Country
CA
State
BC
City
Vancouver
I think it's good that you are recognizing your limits. Perhaps you can just tell him that you need to get some home help. You can not do it all. And get the help.

You will be no good to your Dad if you dont take care of yourself and build up resentment. Your time with him will be much more pleasant and you can concentrate on enjoying the time you have left together.

You can not necessarily do everything they want you to. Sure they have a terrible disease, but you are only human and can do so much. Everybody's limits are different. Try not to compare yourself with others. If there is help available, then that's what you should do in my book.

I dont want to sound cruel, but sometimes you jsut gotta say No to your loved one. You can't do it. As long as you're making sure their needs are met to the best of your abilities, then that's the main thing.

Good luck!
 

Carolan

Active member
Joined
May 17, 2007
Messages
93
Reason
CALS
Country
US
State
TX
City
Dallas
I like the idea of presenting it as a way to help the caregiver, rather than the one needing care. I didn't have this problem--my mother was so worried about imposing on me that she was the one who wanted assistance. Plus, she knew that the only way she could live at home, rather than in a nursing home, was to hire assistance. The only other option was a nursing home, and there aren't too many that accept vent patients (she is vent-dependent). I think the main thing is to allow the ALS patient to have a choice, but to define the boundaries of what choices are actually viable. It's not realistic for family to stay up all night all the time and maintain any semblance of a "life" outside of caring for their loved one. So the realistic options are: move into a nursing home...or accept assistance in the home. Define those boundaries, and then the one dealing with the disease still has some control over the situation, rather than being told "it's this or nothing." That's the worst--feeling like there is no control over what is happening.
 

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
jacobwilson8 are you advertising for Meridian at Home? RevRoyKibodeaux; "I am silent about this." If that is true, why did you post that?

CALS, as sad as it is and as difficult as it is we do have to set limits to save our lives and our sanity. Lola, I am a RN. I could give my husband a suppository or enema, one of my children but my Father? Absolutely not! I applaud you. I can so understand. Personal care is PERSONAL. You have no need to feel guilty in the least. All of you are incredible CALS!
 

Deb A

Member
Joined
Feb 10, 2010
Messages
10
Reason
Loved one DX
Diagnosis
10/2009
Country
US
State
New York
City
Northeast
Oh my gosh, this seems to be a very common issue! Lola, I can relate so so much! Just this week I am struggling with the introduction of Hospice for my Mom's care of ALS. She is 79 and my Dad is 82, and he is making everything I do so much more difficult! I have handled most of everything for this past year from the beginning. He now is telling me they don't need any help and he can get Mom to bed on his own ( even though he has very bad back trouble and his own health problems) I work full time and go every night straight from work, and prepare meals , and do the bedtime routine....and help her into bed. We have 9 to 2 aids coming and now I want to let Hospice send their aids from 2 to 6, so at least, if I choose to can go home from work for a little while , and just go back 7:30 ish to help her into bed.... I think I may have to just make my decisions with scheduling this extra help and hope for the best with my Dad since he is just against it... With your situation, I can't imagine how you must feel that you had to help him in the bathroom.. it was hard enough for my mom, when she finally asked me to shower her the other night for the first time...She dreaded it and I made her laugh, telling her how the generations have changed and how her grandaughter (my daughter) has been to a naked spa! I told her how my daughter wants to take me next time, and I said, NO Way! Anyhow, I feel for you and think you should do what I have decided and go ahead and get the help you neeed. I think we deserve to try and think of our needs, and work on not feeling so guilty! Good luck, because I can't help that myself...Goodnight and be well!
 
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