Good day gone very bad...

[Micheline]

Sorry I haven't posted much lately. However I have been reading every morning since most of my days start at 4am.

I had a visit from my OT and Nurse, lovely ladies. First off they wanted to know if they were getting too pushy by coordinating equipment. They want to have lifts, etc...in place before it becomes a Now problem. It was a huge eye opener for me as I never really thought much into the future, but going day by day. So by the end of our visit I agreed that we can go ahead. It also helped that Steve was there as I am a very stubborn person and try to do "all" so I had to think about him and what he will be dealing with down the road.

My OT is concerned as I cannot get out of the house on my own that I am going to go "backwards"(depression), I am trying to deal with that on my own. They also talked about getting to know someone within Hospice. I am finding it hard to accept my future, and what will happen; okay terrified! How do you force a relationship with someone you don’t know or even trust? What about all the “What ifs”! What if you don’t click, what if your spouse doesn’t like them or the other way around, my kids?! But I will need it in the later stages. The nurse point of view is, I can build the relationship so down the road it will be in place. It is still hard for me to speak to people about my situation, as for family other than Steve and the kids I tell them I have good days and bad days and don’t get into the details. I don’t want to cry in front of them. I don’t want to upset them.

I read one post on here this morning and I cried, I felt so bad for the caregiver. The pain she is going through the frustration and anger with her pals. I don’t want that to happen to my family. Yes I get frustrated beyond belief. Do I take it out on my family (yelling), probably but not meaning to then I feel so bad. Okay enough, moving on…

So Medi-Chair dropped off my loaner wheelchair and power chair yesterday as well. So I’m thinking a have to see my GP on Friday, I’ll take the power chair so Steve doesn’t need to take more time off work. I had an appointment yesterday, so we decided to take the power chair. Well we get out and on our way; one of my worst nightmares come true with this thing. One of the Big (center) wheels falls off. Yes, falls off! Someone put a “screw” in the hole where the “bolt” should be. OMG, can you say freaking out! Steve managed to tip the chair over to put the wheel back on and off we go back home. I made it in one piece. Thank you Steve for being there.

After I get in the car and go to my dr’s. We come home and while transferring onto my stair glide, my transfer board slips off and down I go in between the wheel chair and stair glide. Well, after a bout of freaking out and stressing out Steve and the kids helped me get up onto the steps then transfer back onto the stair glide. So I will swallow my pride, call my OT and let her know.

Micheline

 

[olly]

hi micheline

sorry to hear you have had such a bad day.
coping and learning to deal with new aids can be unpredictable and hard to get used to.
my home was a two storey house with a big garden i loved to tend to,2mths ago i had to move to a ground floor disabled adapted home with no garden.
this is really hard to deal with and i miss my old home so much it hurts.
i know its hard not knowing what the future holds,its best just to take one day at a time.
any steps you do take now in regards to aids and future care will make things easier for you and your family when the time comes.
hope tomorrow is a better day

 

[CindyM]

We encourage CALS to vent because the job is demanding and often they go at it with little support. We encourage PALS to vent because they are giving up so much. No doubt about it- this disease affects the entire family. You and Steve can vent anytime!

 

[joelc]

Micheline, sorry for the bad experiences you have been having! Things do get better. Once everything is in place and you adjust to seeing it, or using it, life becomes a lot easier.

Please don't focus on what might happen in the future as it is different for everyone and no one really knows. Focus on today and enjoy it to the fullest.
You cannot change the future so don't even go there!

I think it is really good to plan ahead and get all the lifts, chairs, commodes, etc. before you need them but that does not mean you have to use them right away, they will just be there for when you do. Once you get your powerchair in shape it will open up the world to you again, I get around more now than before having one.

Take care!

 

[Al]

Hi Michilene. Sorry about the bad day you're having. The wheelchair story ranks right up there with some of the ones by Capt. Al. It does pay to have the aids in the house early. I had the Hoyer lift for almost 6 months before I needed it but when I needed to start using it, it would have been a pain waiting to get it delivered, literally because I was falling. The ALS Society loan people here are very proactive about getting equipment early.

AL.

 

[Jennifer51]

I can relate to bad days...we ordered my stairlift 4 months ago, and went off on a long holida overseas...came back mid december expecting it to be fitted...fitting day came, then the phone rang...parts lost...so they picked another date...phone rang, parts damaged, then another date...parts lost again. Meanwhile we had written several polite but firm letters of complaint, which brought us a one third discount, quite a lot of money off.. so then they said they would fit it this week...they did turn up this time and fitted it, but then they tested it and it would not work with anyone sitting on it..it would JUST work if it was empty...SOOO an independant engineer arrived today to survey it and they hope to remanufacture it and finally fit next week...
The only problem is that when we ordered it I was easily able to climb the stairs, but now...I can barely crawl up them...I just hope I can last for another week until it is hopefully working...so the moral of the story, you should be prepared long before you need things.....I dont know if I would like to put that into pracise with a hospice though.

 

[kylisa]

Reading your post reminded me of the other day. I was sitting with my mother, who is now bedridden. She is still fighting this monster. She continues to want to sit on the bed-side potty. So, we still accomodate her wishes.......

I went to get her out of the bed. I slid her legs around, and I guess she was too close to the edge because she began sliding downward. I almost lost her and had I , we would have both been in the floor. This scared me.

After it was over, and she was back in the bed, we both bust out laughing. I told her we were going to have to cut a circle out in the middle of the bed and then we'd just raise her up to go potty. The thought of that cracked her up.

I hope you can find a bit of humor in the trying times because it will help you get through them.;-)

 

[crystalkk]

Micheline,

It is better to have things before you need them, just incase. You had alot happen in a short period of time, I really admire you because
this is probably your first real complaint. We are here for you.

 

[SteveS]

Although there are days and Micheline knows, when I feel I could rant for hours. It is obviously a continuous learning curve probably due to the fact that we were not on the ALS For Dummies mailing list and everyday brings yet its own challenges. I have a fairly high stress job and I have tried my very best to be patient which is hard for me. Any frustration I may have shown is purely out of frustration not with my Wife, but with the disease. My main motto for life is more relevant now than it ever has been and that is "it is what it is". If I actually had real control over any of this I would probably have planned it better...lol. I love my wife very much. I did say for better and for worse and in sickness and in health and I take that very seriously. I know without a doubt in my mind she would be there for me and never complain to me about it. I am just standing by my woman no matter what. This is more her forum to communicate with people that can truly understand and share empathy and idea's. I am more of a lurker and reader. I will keep my moments of questionable sanity to myself..for now, lol.

 

[kelly]

Hello Micheline,
I am so sorry for your bad day. I totally agree with everyone that it is better to be prepared and have the equipment then need it and not have it. I was so thankful when we had a hoyer lift when my hubby took a fall. I still remember the day coming home from our local ALS center with a loaner walker, chair, hoyer lift, and standing machine. Everything was banging all over the van...my hubby very nicely said do you think that could break the window. I had to pull over...and seriously pull myself together. After that we both laughed hysterically at the absolute insanity of our situation. Also, we had a wheelchair incident (not as traumatic as yours). We went to animal land with our kids....supposed to be a great family outing. The lady warned us not to go up the hills in the wheelchair. Of course we tried and the chair shut down half way up the hill. I put a rock under the wheels and tried to stay as calm as possible. Of course my 7 year old was saying the lady told you not to go up the hill. Out of the mouth of babes. Anyways..thank goodness we found a reset button Disaster adverted. I guess the reason why I am sharing these stories,,,,is that they do pass. My hubby and I can even have a laugh at some of our nutty situations. Stay strong......you will have a lot of support on this forum. Thinking about you.

 

[joelc]

Steve, you need to be here as much as she does. And, you have as much right to be here as anyone. I applaud your attitude to be there for your wife. I personally think this disease is worse for the caregiver than the person who has ALS! I watch how my wife deals with my progression and it breaks my heart. It is a frustrating disease because there is nothing that anyone can do to make it go away. I really respect all CALS for hanging in there and sacrificially looking after their PALS! God Bless you!

 

[laurel]

Hi Micheline,
I am sorry to read that you are having such a rough time. I notice that you mention that your days start at 4 AM. That's pretty darn early and indicates that you aren't getting enough sleep or rest which will compound things for you i.e. anxiety, depression, and just not having enough energy. I'm not a big advocate of sleeping pills due to readily developing dependence on them. But some of the new antidepressants really do help with the anxiety and sleep issues. My husband who has CIDP does very well on a low dose of Celexa. Without it he ruminates and sleeps poorly. It is not sedating and seems to have minimal side effects. There are many good ones out there--worth talking to your GP or even the ALS Clinic about one that would be appropriate for you.

You mention that you aren't confiding your feelings to your friends as you don't want to cry. I have been a friend to a few people who have had serious illnesses, and as a friend I did not feel imposed upon or upset when they cried and vented to me. I felt that somehow I was helping and felt honoured that they would spill it out to me. And I think that it did ease things for their families to have someone else in on the loop of misery so to speak. People are stronger than we often think they are, and most want to help. It really is better for you if you can open up and trust others with your feelings.

Concerning making a connection with hospice staff, we don't always make a good connection with people we meet in the helping professions, but from my couple of encounters with hospice volunteers with my mom and my best friend they seemed to be people who were carefully selected and they were well trained to be sensitive and non-intrusive. I really liked them and needed them with my mother in particular.

Take care. I hope the days ahead are better ones.
Laurel