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Old 03-06-2012, 08:35 PM   #1 (permalink)
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Default Decision is made

So , it has been awhile since I last posted. Mom was diagnosed 1 month ago and I was at a standstill as to what should be the next step and should she come home with me. Mom and dad both live at a retirement home (they moved in Jan /11 because dad was not well, mom was like a 50 year old and very active),but her care was getting heavier. 1 1/2 weeks ago she slid to the floor and instead of calling me the retirement home called an ambulance, the paramedics said she was fine and mom did not want to go to the hospital but the home told her she had to go. When she got to the hospital the ER doc told mom that the home informed the hospital that they refused to take her back ( at this point I am pissed because the day before I had a meeting with the community nurse and social worker and told them that I did not want the home to all of a sudden say that she could not stay and they assured me this would not happen and we had time to plan where she would go. It was a rough day at the ER with mom sobbing that she wanted to go home to be with dad and then begging me to take her home with me. Here where we are if a home sends someone to the hospital and refuses to take them back the pt is assessed by PT and OT and if deemed to be Level 3 care thay are at the bottom of the waiting list for nursing home and they can spend up to 1 year in hospital waiting where as if the home had just left the paramedics get her up and called the community nurse to assess her asap she would have been considered a community emergency and would have been at the top of the list for nursing home.
So in my heart I knew that I could not leave her to die in the hospital away from my dad so the decision was made to bring both mom and dad to my home. They will have 10hr of care a day and I have spoken to my siblings (who usually tell me what should be done but not participate) and I spoke my mind and told them what they had to do to make this work. At this moment they seem to be in agreement. So now the paperwork and planning begins. We have an excellent ALS society who will provide any equipment she may need, we have purchased a stair lift , and I have found 1 worker who will be a blessing for everyone. My goal is to have them here by Easter and I will be taking a couple months off work to hopefully get a routine set up and find that second worker I need.
Mom saw her neurologist yesterday and a resp referral was made and Rilutek was started. I see a big different in the past month. She is now unsafe to use the walker alone, speech not understandable most of the time, and swallowing has worsened and she now has a minced mashed diet. What an awful disease!
She still has crying episodes and anxiety attacks but she does seem more relaxed since finding out she will be home with me. I have decided to keep her on the waiting list for the nursing home just in case.
Stress is still there but actually feel a little less since the decision was made. I pray that she will have peace while facing this monster and that I will make the journey more bareable.

Thanks for listening,

Jennifer

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Old 03-07-2012, 06:51 AM   #2 (permalink)
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Default Re: Decision is made

Wow, what snakes that retirement home is... nothing like kicking someone to the curb.

I'm glad that the decisions have lessened the stress for both of you a bit. I find it harder to make the decision rather than doing it afterwards. Guess I get all my anxiety about it answered in my head first, so I can live with it later.

I'm sorry you're going through this with your Mom, you're a good daughter to be there for her and your Dad. And definitely agree with keeping her name on the nursing home list, she may need it, but you may also just need hospice when she gets worse and avoid that altogether.

Good luck Jennifer, and keep us posted.
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Old 03-07-2012, 07:35 AM   #3 (permalink)
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Default Re: Decision is made

I'm so sorry for the predicament the retirement home placed you in. I hope everything works out for you to bring your Mom home by Easter. What a wonderful daughter you are to try to keep your parents together. Do stand your ground with your siblings and see to it that they participate. Please keep us posted on how things are working out for you. You and your family will be in our thoughts and prayers.
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Old 03-07-2012, 10:20 AM   #4 (permalink)
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Default Re: Decision is made

Jennifer my prayers are with you I was recently in a nursing home and believe when I say it wasn't all bad but I am so glad you are trying to keep them together as long as possible please make sure your siblings allow you sometime for yourself maybe a contract drawn up with a month to month schedule might help I have found with many illnesses not just als some family members seem to disappear on you I wouldn't want to see you have to take care of them by yourself my prayers are with you
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Old 03-07-2012, 10:32 AM   #5 (permalink)
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Default Re: Decision is made

Jennifer. You should be so proud of yourself making the decision to look after both your parents in your home. What a wonderful thing to do. As far as sharing the care (there's actually a book called that), you and your siblings and whoever else might be involved in caring can make a list of things that will need to be done on an ongoing basis - shopping for groceries, picking up meds, taking your mum to her appointments and generally keeping two steps ahead of this terrible disease. And of course loving and caring at home. You can all decide who would be best at doing what and go from there. I hope you get all the help you're counting on. The 10 hours a day to start sounds great! Take care sweet lady. Yasmin
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Old 03-07-2012, 11:00 AM   #6 (permalink)
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Default Re: Decision is made

Wow, that was cold of the retirement home! That was pretty underhanded! You're a good woman and daughter. It's good that you've got your other sibs to agree to do their fair share. I hope it happens like that. God's blessings and protection for your Mom & Dad and You and Yours.
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Old 03-07-2012, 11:35 AM   #7 (permalink)
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You are doing great! Your parents are very lucky to have you and your siblings looking out for them. That retirement home should be ashamed of themselves.
Wishing you the best of luck
Meg
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Old 03-07-2012, 12:43 PM   #8 (permalink)
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Default Re: Decision is made

That was so cruel of the nursing home. So gladd they have a daughter with a big heart and has taken on this huge resposibility. You are wonderful!. My prayers are with you and mom & dad. Hoping all the others help you out also. Keep us posted. {{HUGS}}
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Old 03-07-2012, 07:38 PM   #9 (permalink)
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Default Re: Decision is made

Wow, how horribly cruel the home acted to you mom and dad. best they are outta there...you should write a letter to the newspaper or local news channel about this--perhaps they would at least get some bad press. You have taken on a big load, and sound like a loving daughter. good luck to you--you are doing a good thing!
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Old 03-07-2012, 09:32 PM   #10 (permalink)
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Default Re: Decision is made

You are a brave woman. Like others have said, make sure your siblings understand what will be required of them, and make sure they stick with it. You will probably need to have them take turns a few nights a week spending the night. Sleep deprevation is not uncommon for caregivers.

My heart goes out to you. Remember we are always here to help. Take care.
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Old 03-07-2012, 09:48 PM   #11 (permalink)
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I send you the best of luck in dealing with the care of your mother. I cannot emphasize enough the role family members can play in her care. You WILL need them. Please make sure your family understands the whole situation.

Good luck to you and your mom and dad.
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Old 03-08-2012, 07:37 AM   #12 (permalink)
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Default Re: Decision is made

I echo the importance of family members helping you out. I took care of my sister by myself for a while. I was exhausted and had to recruit others to help as my sister progressed. I wish you much luck as you all try to cope with what is happening.
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