Visiting sister with ALS

[oldmoor]

I have been reading the comments on this forum for a few months trying to understand what is the best way I can help my older sister. She initially was diagnosed with PLS,and plateaud for about a year. Suddenly her condition changed, and in just a few months there has been a marked decline in her ability to move independently.She is now considered to have ALS. She has had a loving caregiver, but unfortunately ,she has injured her shoulder and must have surgery. I am going to help out while she recovers from surgery.The injury is the result of lifting my sister. I am going to visit her in a week-8 hour drive-and am nervous about how to help move her without injuring myslf. I have read about some of the Lifts,and think that might be helpful for she and her husband to look at. However, she has never discussed the AlS diagnosis,and I don't want to upset her. I think we need to talk honestly. I love her very much, and don't know how to approach the subject. Please give me some advice on how to let her know I am aware of the diagnosis and what it implies. We just lost out mother,and are both pretty emotional. Thank you for your help.

 

[brooksea]

Hello-

Sorry that your sister now has ALS. She is lucky to have a sister that is able and caring.

I don't know exactly what to tell you, except to be straightforward. Perhaps try to find a time when y'all have some privacy and broach the subject by letting her know how much you love her and that you will do whatever is necessary to help her and her husband through this ordeal.

Yes, it will be very emotional. And she may be in shock and may be angry or extremely depressed. If she isn't on an antidepressant, it might be helpful if she started taking one. That was helpful for my husband and after he got over the painful reality of his diagnosis, he found he no longer needed an antidepressant.

I believe that your sister will be open with you and you will find that she is more than grateful for your love and understanding.

I cannot help you with the lift issue, as we are not "there" yet. Maybe someone else can reply to that.

I wish you good luck and a safe trip!

CJ

 

[Al]

Hi oldmoor. Welcome but sorry you have to be here. One thing you could try is telling her about this great site you found while trying to get information. Bring her here and let her read some of the posts. Look up lifts or Hoyer lifts in the search feature. It might work.
AL.

 

[terri]

You did not mention where you are from but if you are in the U.S. , I would recommend having the doctor set up for Home Health to come out and access your sister. The PT's can help you decide which type of lift will work best for her and show you how to use it properly. For us, they did all the ordering of equipment which was a help because we would not have known which of the medical supply companies to use. The PT's can also instruct everyone involved with care Range of Motion exercises and proper moving so as to not hurt yourself or your sister. Medicare or her insurance should cover all cost.

Hope this suggestion helps. Thanks for being such a good sister.

terri

 

[oldmoor]

visiting sister with ALS

Thank you so much for the thoughtful advice.

Each of you have helped answer my questions,all with different ideas that I know will be helpful. I will take these suggestions and try to apply them to our conversations. Sharing this site with her will be primary in my thoughts.

We will have a lot of time in the coming week when we can talk privately. I will also be going with her to her quarterly visit to the clinic and meet her doctor. I think that will be a good time to inquire about the Home Health assessment.

Again,thank you. My sister is an inspiration to me, and I want to be as helpful as I can be.

 

[wewillbeatthis]

oldmoor,

I am so sorry that you have to go through this. I am also sorry for the loss of your mother... I am certain she is looking down upon you and your sister and believe she will give you both the stregth you need to get through this.... ALS is a very difficult disease to understand from person to person it is so different... This site is such a God send for people that have the disease and those of us that have someone in our life with the disease... I agree with Al that you must introduce your sisiter to this site. She will find much comfort and friends to talk to on days that she is feeling good and wants to reach out and help others as well as days that she is feeling down and needs someone to talk to... We are all one big family....

I am sorry that I can't help you on the subjet of lifts but do believe that you will be able to find several options on even the yahoo search egine. If your sisiter is going to clinic there must be an occupational therapist that can speak to her and her husband about things that will work around the house to maintain her independence and the safty of all involved.

Another great suggestion is stress the importance of keeping her mind busy... Happy thoughts whenever possible although it is fair allow the bad days as well.... If you go through some of my posts you will notice that there are times that I need advise to help dad get through some tuff days, and then there are times when mind over matter kicks in and we beat whatever trys to come our way....

God Bless and know that you and your family are in my thoughts and prayers.

Jen

 

[oldmoor]

visiting sister with ALS

Dear Jen,

Thank you for the encouraging response. I can tell this forum will be a real Godsend for me, and hopefully for my sister.

I do feel my mother's looking over us and steering us as we attempt to accept the ALS
diagnosis. I am hopeful that Sister will have many wonderful days to enjoy. She is a real lover of birds,nature,music,gardens,animals,and people. She comes up with great ideas for places to go. She has a van with a ramp and can scoot her wheelchair right up,and away we go. She is also a realist,and probably much further along than I am in accepting the changes in her body. She is not in pain. These are all things I am grateful for,and give me hope for her well being.

Thank you again fo letting me share my thoughts. You probably can relate some of this to your dad .

Mary