View Full Version : Another new caregiver
slm49
07-21-2008, 05:20 PM
Hello,
I've been trying to figure out how to post a question so hopefully this is the right place. My husband has been diagnosed with MND but so far there is no definitive diagnosis although it looks like this is what it is going to be. We are devastated and completely consumed with all of the changes etc....... that we are dealing with and everyday seems to bring new challenges. I've been reading many of your messages and already I feel like this will be a new home for me. thank you!
Sharon
PDaddy
07-21-2008, 05:35 PM
Welcome Sharon, you came to the right place!
jimercat
07-21-2008, 05:51 PM
Hi Sharon!
Sorry about your husband. Hopefully you will find answers to your questions and make new friends here.
brendapals
07-21-2008, 08:24 PM
Welcome to our home Sharon,
Which do you prefer-cooking or cleaning? hahahaha
Just kidding, I try to keep life light from my end of the spectrum. You will find a lot of help here.
Keep the faith,
brenda
kelly
07-21-2008, 10:44 PM
Hi Sharon,
There are alot of amazing caregivers on this site. Feel free to ask any questions, we are all in this together. Fondly, KR
MtPockets
07-21-2008, 10:50 PM
Sharon, welcome to the forum. I am sorry for the reason you had to seek us out. Feel free to jump in anywhere with any questions you may have. You can also use the search feature above to find specific things you may want to read about.
Like Brenda said we are just one big family here. I would have said Happy, but some days that does not work too well. We understand where you are with your emotions. We have all been there done that.
hopingforthebest
07-21-2008, 10:52 PM
Dear Sharon
I hope your husband does not have ALS but if he does, that his progression is very slow.
We are all basically going through very similar issues as you read all the posts. Some longer, some quicker but we, as caregivers, have a common ground coming to this forum, sharing our concerns for our loved one.
The people that answer your posts are the most caring wonderful people and my heart breaks for all of us.
Sometimes in the day to day care of our ALS patient, it is hard to find humor but you will laugh with others and other times cry as if you know them personally on this forum. For me, it is place where I can bear my soul and help carry the burden and pray for those in need.
We all welcome your questions, concerns and sharing!
Patty:)
slm49
07-22-2008, 09:49 PM
Thank you to all of you for responding to my 1st posting. I am trying to find the time to read info on this forum b/c there is so much that will be very, very helpful. We have been having some bad days as we try to deal with this disease and I can't believe how terribly cruel it is. I cry watching Ron trying to do the simplest of tasks and I think that this is just the beginning!! I am really going to need a lot of strength and help, especially from this community. So thank you again.
sharon
Hi Sharon. Have you contacted the local ALS Society of Ontario chapter yet? They can help with support groups, equipment, advice and a lot of other things that I can't think of at the moment. Their site is www.alsont.ca Check it out if you haven't already. That's me in the top right of the home page. Are you seeing Dr Strong in London? He's in the top 3 or 4 Neuro's in the country.
AL.
MtPockets
07-23-2008, 12:40 PM
Sharon, welcome to the forum. Please know you are not alone in what you are experiencing. Many of us have been through the same emotional roller coaster that you are now facing and we have made it out the other side. I'm not down playing what you are going to face, but just sharing that we can identify and help you along the way. We are here to help one another the best that we can through this ordeal.
Remember you are not alone.
slm49
07-25-2008, 10:34 AM
Hi Al - thanks for your info. I did fax the registration forms to the ALS society on July 15 & we are waiting to hear something from them. I also called them on the 24th & left a message but still haven't heard anything so hopefully today they will call back plus I'll make another call. Another person I contacted is the support group leader here in London but I missed a meeting on the 21st. Our timing hasn't been great! I'll keep trying. There is so much going on right now since Ron just got his power wheelchair and now we need other equipment so I haven't had a lot of time to get things done. I haven't even had too much time to spend on this site. It was nice to see your picture; thank you for telling me who you are. I'll try to get on this site more often. Today I was trying to search for info on lift chairs and I clearly have not mastered the searching yet. Take care.
sharon
MtPockets
07-25-2008, 03:11 PM
The MDA and ALS society can help sometimes with loaner chairs like the lift chair. If no luck with them try researching site's like this one:
http://www.la-z-boy.com/furniture/collections/power_recliners.aspx?action=Lift
Hi Sharon. I had a lift chair on loan from ALS ONT. and have a walker, hospital bed, Hoyer lift and commode chair. Let me know if you don't hear from them soon. I might be able to call a friend for you.
AL.
califsand
07-26-2008, 01:48 AM
Another good place to get equipment and financial help is the MDA (muscular distrophy association). They have a lot of resources for ALS patients and can purchase communication devices but often they have them in their loan closet. They have things set aside for ALS that are often untapped because we don't think of going to them for help since it is a different disease that they are known for. When in doubt, contact all of those organizations because they may have resources to send you to and in the end you may be able to get needed equipment for free from the various loan closets.
I'm glad you found us early on and hope that you will come here when you need to talk to someone who understands what you are going through. There is no shortage of wonderful people here who will give of themselves if that will help ease some of your struggles. This is also a great place if you need to vent and let all of the ugly feelings hang out, nobody judges you for being human, instead they just wrap you up in a warm hug full of understanding. It is a great resource for us all!
Take care,
Sandy
slm49
07-27-2008, 12:16 PM
Once again, thank you everyone. I am trying to figure out how I send a private message to someone. When I try to find the required info it tells me that I am not authorized to do this? Is there somewhere that I go to ask questions about how to use this forum? I have been reading through the FAQs but can't find the answer to this.
Al - I will contact ALS Ont. Thanks.
jimercat
07-27-2008, 12:23 PM
Sharon,
You will not be able to Private Msg anyone til you've posted for a while. Maybe Al or Cindy can help you out.
CindyM
07-27-2008, 05:58 PM
We had a huge problem with spammers taking over the site with all sorts of nasty stuff so we had to put in some controls. Now new registrants have to wait a bit before being able to access all the site's features. I know it is a pain but the waiting period is not very long so full membership will kick in soon. Just keep reading and posting your sincere thoughts and before you know it you will have full membership.
Meanwhile, ask away at anything. And don't forget the search feature on the top of this screen. You will be amazed at the number and type of topics that have been covered around here! :-D
Hi Sharon. I've sent you a private message.
AL.
slm49
07-30-2008, 05:14 PM
We had a huge problem with spammers taking over the site with all sorts of nasty stuff so we had to put in some controls. Now new registrants have to wait a bit before being able to access all the site's features. I know it is a pain but the waiting period is not very long so full membership will kick in soon. Just keep reading and posting your sincere thoughts and before you know it you will have full membership.
Meanwhile, ask away at anything. And don't forget the search feature on the top of this screen. You will be amazed at the number and type of topics that have been covered around here! :-D
OK - I will be patient and keep posting in the meantime. Ron is now more comfortable now that he has a power wheelchair but this has presented new challenges, i.e. transferring issues. We are trying to be as positive as we can be and keep looking for ideas to keep us laughing and enjoying life. I must do a search for tips/ideas on what people do for intellectual stimulation. Ron enjoys virtual flying but he needs some other intellectual activities. Our friends have been supportive and our Rabbi visited today, even though he is fighting cancer. Life certainly is a challenge; that's an understatement! Thanks for listening.
sharon
Hi Sharon. Did you get my private message. You can reply back here.
AL.
slm49
07-31-2008, 10:50 AM
I did get your message. Thank you so much Al. I enjoy reading your posts.
Sharon
slm49
07-31-2008, 06:38 PM
Hi Al - I did receive your 2nd message; thanks for the info.
Sharon
paybackranch
08-02-2008, 05:31 PM
Hi all.........the MDA loaner closet gave us a lift chair for my husband, Jerry, who is barely able to walk now and asked me for a recliner last Sunday when I went to visit him (he is in a nursing home--also has fronto temporal dementia, which is why he is in a nursing home). I knew that there was no way that I could afford a lift chair, but the loaner closet had one...had just gotten it in. In all of the years that they have been helping families, this was the first lift chair that had been donated--and I got it for Jerry !! We covered it with a waterproof fabric that wouldn't let his liquid food ruin the chair on Thursday and brought it to him yesterday. He was thrilled. He has never taken naps before in his life, but now feels the need to do so. He is in the last stages of his form of ALS (bulbar) and it is moving rapidly in his limbs. His legs are strongest...and they are not so good. He cannot get out of bed by himself, nor can he get into bed by himself, so this lift chair is a blessing. Do check out the MDA loaner closets !! We got his Dynavox, his Rascal scooter and now the lift chair from them. No charge.
Melanie
jimercat
08-02-2008, 05:59 PM
Melanie,
That is so wonderful! I know you have to be thrilled that you have helped your husband with his wish.
How are you doing yourself?
The first thing I tell people when they come here is to contact the ALSA/MDA or ALS Society here in Canada. They have so much support and help available that is free to patients. I've had walkers, bed and on 3rd different type of mattress, wheelchair and Hoyer lift and commode chair. Probably $ 25K or more. All from the loan closet. I can't say enough about how the ALS Society has helped us. It only takes a phone call.
AL.
JACKIEMAX
08-03-2008, 04:44 PM
hello . i have been in this forum for over two years, and 'this' is where i have rec'd the
best advise and information, not to mention tender loving care. you can read volumes
of research etc. about als, but this forum contains the day to day real-life situations
of als patients and caregivers. these people care....
everytime i get discouraged, tired, exhausted even, and ready to give up and
have a 'pity party', i realize i am still healthy, and my husband, who was the healthiest
man i've ever known, even at age 69 when he was diagnosed, is the one who has
als, and going through the nightmare of losing all his strength, knowing there is
no cure for this monster disease, and knowing he is going to lose this battle, then'
i realize that no matter what 'i' am going through', he is going through much worse,
and no matter what i do for him to take care of him daily, he would also do the
same for me.
we are here for you and each other.
jackiemax
slm49
08-06-2008, 11:45 PM
I just finished a crying jag and then I logged on and found jackiemax's message. It is good to receive this kind of info and support. My husband turned 60 on May 6th and he has been having problems since the spring of 2007. It is now over a year later and the diagnosis still is not definitely ALS but we have been going to the clinic here in London and we have been given all of the info, the resource manual, etc. The doctor just can't say 100% that it is ALS. Like anyone else who is living with this disease knows, he has had to give up everything that he thought he would do when he retired. He retired in June 2007. What a retirement present.
We really need a counsellor to help us and when we asked the social worker on the clinic's team for some names she told us that she couldn't really recommend someone. We did see a social worker through CCAC (community care) for 4 sessions but I really feel that we need someone who is familiar with this disease. I have asked other people who I thought would know of someone but we seem to be getting nowhere. I am going to do a search on this site to see if anyone has ever recommended a counsellor in the London area.
I seem to be crying every night at bedtime, especially when Ron thanks me for the care that I have given him that day and when he tells me that he loves me. He is a wonderful person. Thanks for listening.
sharon
CindyM
08-07-2008, 09:16 AM
Hi Sharon- your hubby sounds exactly like the way I want to be if I ever become totally dependant. You guys sound like a wonderful couple!
BTW, there is nothing wrong with asking your own GP for some mild anti-depressant meds. You are sad for a very good reason - who wouldn't be?-but I hear you when you say you want to enjoy what time you have together. He could be like me- I had symptoms that hit with a bang and then stayed the same now for 2 years. But even so, living each day to the fullest is not a bad concept.
MtPockets
08-07-2008, 10:27 AM
It really is a blessing to me to see how people open up to one another on the forum. I know the heart aches, stress, pains, worry, fears, doubts, etc. And Oh yes, the Pity Parties I have had for myself, when no one would come to them.:-D
I could always lay my heart open here and have someone lift me up from the depths of depression. I just wanted to be sure to Thank You ALL while I still can, for the love and care you have not only showed me, but one another. May god bless you and keep you until the end of days, in His love, mercy, and strength. You are a blessing.
http://i160.photobucket.com/albums/t172/ShakeyMarble/Animations/dovebible.gif
Hi Sharon. I sent you a Private Message. Please let me know when you get it.
AL.
slm49
08-08-2008, 01:35 AM
Hi Al - thank you for your message. i will give you call once life settles down around here. We have had so
many friends droping by and bringing dinner, etc. so it has been lovely. I find that I can't spend as much time on here as I would like. We will try to fit in a call as soon as possible. You are also in the 519 area code so I'm wondering where you are??? Thanks Al, we'll be in touch.
sharon
We're in Orangeville. North west of Toronto. You should be able to Private Message me if you prefer.
AL.
