I'm new and I need help!

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Hello, all. I wrote aimee the other day and poor thing, I dumped on her. But I was so happy to find you all that I was crying in front of the computer screen!

My Mom was diagnosed 3 years ago and I'm her primary caregiver. The details of the last 3 years are, I'm sure, what you all know and have gone through. But please listen to what happened to us and see if you have any ideas.

2 weeks ago, the VNA Nurse with the NEW head of the VNA walk in on a Friday afternoon and announce that the aides are not allowed to lift my mom anymore. Mom needs a full lift now and we have been doing it manually for 3 years (of course, it's really a "full" lift now). Our aides are the most beautiful helpful girls. What was terribly upsetting is they did not offer a plan, a hoyer, a sling, anything! Overnight, my mom was to be confined to the bed all day. She has never even used a bedpan.

The VNA head says to me, Well, you know you've had your mother for 3 years. O dear Jesus, what was that supposed to mean? I looked at her and yup, she meant it the way it was said. I think hospice wants to wipe their hands of her. She's lived too long for them so that's it!

Now, TWO weeks later, we finally have a hoyer (had to raise the bed so it would get under), and the equipment company shows up while I'm not there and offers my Mom(!) two different slings and asks HER which one she wants! I can't believe this! So they leave both and warn her that she has to return one. Neither one works. The hired evening aide has figured out that if we roll up the bottom three times, she can get my mom into bed without too much respiratory distress. Now they tell me they cannot get the right sling for her. What they have is what they have.

Ok, so now I've been trying to get a PT or an OT in to help us figure it out. I leave messages with the VNA nurse and nobody calls back.

My heart is just broken. If I leave the VNA, Mom will lose the girls that she loves and loves her. But this is just too much for us to bear. I am going to have a breakdown and my Mom is so depressed I don't know what to do -- and she is a saint!

Please, please, if you have any thoughts, questions, anything at all please offer them. I need help.

 

[DgtofTNfan]

Hi Nancy,

I think you are on the right track with getting a PT or OT evaluation to improve transfers and make recommendations for slings. There are more than 2 slings in this world and they can be ordered. A resourceful DME company might even trade slings with another DME company who has what your Mom needs. The PT or OT would be a good advocate in helping justify getting the sling your Mom needs from the DME (equipment) company or help you find a different DME company.

If the VNA agency will not help you get PT or OT orders, skip them and call the physician directly and request orders.

I am impressed that the " NEW head of the VNA" came to your Mom's home to personally assess the situation. I am not impressed that they implied that her care needs were too great yet took 2 wks to get a hoyer that could have been delivered within 24 hours in my neck of the woods.

Overall it sounds to me like the agency was concerned about caregiver injuries (back injuries are very common among nurses and especially nursing aides) but they handled it poorly.

I hope you can get her transfer worked out for the safety of all involved.
Dana

 

[ZenArcher]

Have you spoken with the local ALSA chapter?

 

[[email protected]]

Thank you, Dana & Jeff, for your help.

I did not know I could go searching for another DME company. The VNA only uses a particular one and I've been told a number of times that that is all they can offer.

We will purchase a sling if we have to, but they are not returnable and we've already spent a lot of money on equipment that hasn't worked.

Just to clarify, Dana. The head of the VNA didn't come out for any other reason than to give my mom the "bad" news. I know better than anybody how difficult it is to lift my mom (and she's tiny!), and I do understand about injuries. It's just that, as you said, it was very poorly done. It's so hard dealing with this on top of everything else that has happened in the last 3 years and seeing your Mom suffer even more.

I am so sorry to hear about your Dad. Just know that he is happy and well and waiting for you.

And yes, Jeff, I will be contacting the "local" ALS chapter, but I have not found them helpful in the past. There is just nothing close to us. But once I get my strength back up (what do you think...a few hours?) I will begin again. it may be a two-glass wine night! ha, ha.

Blessings, Nan

 

[kelly]

Nan,
Make it a 3 glass night if you need too! Sounds like such a challenging situation. You deserve a GOLD STAR for caring for your Mom! If I was tricky with the computer I would post a gold star. I agree with Jeff about the local ALS center. They may be able to offer suggestions and mail the sling to you. Hang in there.
Kelly

 

[Miss]

I'm just beginning this journey, and I am terrified! My husband is a very big man. No way I will be able to lift him. Will the caregivers use the lift? Sounds like we need to decide which one will work best before we actually need it.

Good luck to you. Keep us posted on how it goes for you. You will love this forum. The people here are wonderful and full of fantastic advice.

 

[Terri33]

Hi nancy,

I am currently working on getting some kind of lift for my mother, who we call nonna nancy so thats kind of funny, anyhow hospice is sending an OT tomorrow to assess the situation. hopefully they will give us what we need. I would keep making phone calls. I also deal with the joan dancy foundation in red bank, NJ. I see you are in NJ, maybe they can help you. They are fantastic!

 

[strikeout]

Nancy, How about contacting the MDA in Maywood? They should be able to help you.
Terri, You are right, the Joan Dancy Resource is incredible! Have you ever attended either of the support group meetings/ (Brick/CALS or Red Bank/PALS) Not sure if they go as far as Morris County, but they might be able to steer Nancy in the right direction.

 

[Terri33]

I have gone to several meetings, both caregiver and patient. they have been incredibly helpful.
Contacting them could only be helpful, we all need guidance & support to cope with this devastatingly cruel disease.

 

[Miss]

Terri33, are your support groups through your ALSA? I have been trying to find one here for caregivers - no luck so far, though.

 

[Terri33]

Don't think it's through ALSA. You might want to try MDA in your area, they can be a great resource.
Good Luck

 

[luvnmm]

Good Morning Nan
It definitely sounds like you're having a rough time right now. I'm so sorry that things are going the way they are. Definitely contact the MDA and the ALS for any additional help or advice they may be able to give you. Please keep us posted on how things are going with your mom. I hope you get her transferred soon.
Take care, and have a blessed day.

 

[strikeout]

Terri, I must know you, I've been going to the caregiver meetings for over a year.

 

[strikeout]

Nancy, I found a phone number for the Maywood MDA 201-843-4452

 

[[email protected]]

Hello to everybody!

Sorry I haven't written back in so long. It's really been a bad couple of weeks. Finally, yesterday the PT came out and showed us how to use the hoyer.

My goodness, what a joke! The aide and I knew more about what was going on. He was a sweet man, but he really didn't know that much.

Thank God, I found a sling on criagslist this weekend from a lovely lady, took my grandson who is the same size as his greatgrandmother (4'10"!) and had him try it for size. It's working so far! Not great, but better than anything the VNA had to offer.

Thank you, thank you, for the contacts in NJ! I'm still reeling. Have you all ever felt like there is just no energy left for one more fight, one more phone call, one more contact who won't be able to help?

And please tell Nonna Nancy that I would love to meet her! There are so few of us "nonnas" left!

God bless you all and keep the ideas coming and I will let you know what happens.