New caregiver

Status
Not open for further replies.

brucker1960

Member
Joined
Mar 15, 2021
Messages
12
Reason
CALS
Diagnosis
05/2021
Country
US
State
WI
City
Rhinelander
I am now a caregiver. My husband has bulbar ALS. I feel like I'm swimming in a pool of grief and it threatens to pull me under. I try not to cry in front of him. Today I stood in the basement and cried when I looked at all the foods on the pantry shelves that he can't eat anymore. It seems silly and trivial but still it upsets me. I'm grateful that he can still walk but I will never hear him speak again and we both feel so cheated because of it. He has a PEG and he is gaining back the ten pounds he lost. I keep trying to find some bright side but those are hard to find. Thank you for listening and I am grateful to have a place to talk.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Any time, Brucker, we're here for you. There will always be grief but you will cry less and find more joy with him. It is not trivial at all to mourn the loss of any ability.

You don't have to keep a stiff upper lip with him, either. He is sad and angry, too. You will mourn in different ways, but as long as some of that is together, you can find the happiness that is still in front of both of you.
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
So sorry to welcome you here. My husband also has bulbar ALS/PLS. It breaks my heart that I know I will never hear his voice again. I listen to recordings of him from years ago and it makes me smile and cry at the same time. He got his G-tube last week and is also working to gain back 15 pounds. I know what you mean about looking at the food in your pantry. It is so depressing.

I don't know how anybody could go through this and not cry sometimes (or more accurately, a lot). I think it helps to get the sadness out. I try not to do it in front of him, but I'm not always successful. That feeling that we are getting cheated out of the future we were supposed to have is just so overwhelming. Exercise helps me refocus and get some of the negative energy out. Plus, I find it helps to take some time for myself, especially now while he is very self-sufficient.

I'm trying to focus on the good times we can still have. My husband is also still mobile, and we are able to do most things (at least we will once he heals up from the G-tube insertion). I'm hoping we can make some great memories this summer.

I don't have any magical advice but I will say that having this forum to get advice and to vent has been so helpful.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Sometimes it helps to have a cry with your husband, particularly as you both come to terms with the grief and shock. My Chris found he felt he could offer me comfort and that helped him.

Every one of those losses you are seeing, like the pantry shelves, are totally valid. My husband was a cafe owner. So his life was providing home cooked food and coffee to people with a huge helping of conversation and laughs. That was taken from him so quickly and every single loss was felt as another little death.

We have no magic I'm afraid, but I did learn to slow down, take things one day or even one hour at a time. I cried a lot, I didn't think the screaming inside my head would stop for some time. But I found a mix of antidepressants, this forum, FB closed CALS groups and a counsellor brought me to a place where I could and did cope. We can be part of helping you find that, but it won't be easy. But then we won't sugar coat things either - we will offer you support with realism. I hope that will help as each of us find what is the right mix of strategies for ourselves.
 
  • Like
Reactions: rmt

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Oh yes, the feeling of being cheated, I still feel that one the most strongly if I allow myself to look back at what happened to my Chris and to us as a couple. Ripped off, is how I have always said it.
 
  • Like
Reactions: rmt

vltsra

Senior member
Forum Supporter
Joined
Nov 12, 2015
Messages
549
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Dear Brucker, sorry to welcome you here. I've been at this 5 1/2 years now although my PALS was limb onset. I cried every day for the first 6 months and could not function. I had friends who thought I was overreacting and did not understand. In no way are any of your feelings trivial or silly.

I did start on an antidepressant about 6 months in, and it helps me feel a little less emotional. I still have my moments. It helps a lot. It is OK if you can't find a bright side, there isn't always one.

BTW my grandparents homesteaded a farm back in the days not too far from where you are (Armstrong Creek). I have fond childhood memories of my visits there.

V
 

brucker1960

Member
Joined
Mar 15, 2021
Messages
12
Reason
CALS
Diagnosis
05/2021
Country
US
State
WI
City
Rhinelander
Feeling angry today.We were so careful about mask wearing and staying out of places because of Covid. We got vaccinated as soon as we could but what Covid didn't take ALS has. I can't watch people today going on about how happy they are to get back normal with our new normal breathing down our necks. Sometimes it does help to vent. The PEG is working but DH is losing weight. I need to call the dietician and see what we can do to boost the calories. Does anybody have any suggestions?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,696
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
What are you feeding now? Is he tolerating it well?

how is his breathing? If he is having respiratory issues even just at night that ups the calorie burn considerably. Some PALS are hypermetabolic anyway but if he is taking in a good amount and losing look at breathing. Sorry.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
It will help if you let us know what you are feeding now and how many calories he is taking in.
That way we can suggest ways you can boost this.

Nikki asks good questions then too as this issue of weight is connected to everything.

Another question is how much he is doing that is a struggle for him.
A good example is my Chris would take at least 20 minutes to dress himself of a morning. He would then come out and sit down to breakfast and he was already exhausted. He was still walking, and his hands were weak, but he could still use them.
The first morning I assisted him to dress, it literally took less than one minute (we timed it) and he came to the kitchen and was truly amazed at the fact that he did not feel exhausted. He was using so many calories to get through what is normally a daily task we do without a thought.
 

brucker1960

Member
Joined
Mar 15, 2021
Messages
12
Reason
CALS
Diagnosis
05/2021
Country
US
State
WI
City
Rhinelander
He has 7 cartons of jevity (285 calories)a day with 180 ml of fluid per feeding.Breathing is good. He doesn't use any NIV devices. I may try the dressing issue though. He commented the other day about how much longer it took him to shower and dress. I am calling the dietician tomorrow to find out if I can add something extra to his tube.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Thanks for the details, really helps!
7 cartons is a lot of fluids - he may benefit from a formula with more calories per carton, but lots of them get their calories from corn starches. I would talk to the dietician about the highest calorie formula with the least corn starch.

We really encourage PALS to find as many ways to conserve energy as possible.
It can be hard to get this across the right way as it can seem like we are trying to stop them doing things and they often want to do as much as they can.
If you can get it across from the view of - let's use strategies to stop you wasting your energy on mundane things like dressing, <add anything else that is sapping energy here>. And increase the time and energy you can have to do <add things he really enjoys here>

If we can increase his quality of life by giving him energy for what he enjoys, and save calorie consumption on things that are just sucking from him, this will hopefully help him not lose weight.

As Nikki says, many PALS find they just burn calories like crazy, so they can find they need at least 3-4000 calories per day just to maintain. I don't know what your husband will need, but it would seem that 2000 is not enough, so aiming to get him up to 3000 and see if that stops the loss. I would be aiming for that on top of the strategy of saving energy.

Hope that helps - it's not quite simple math as everyone is different, but it's a guide.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
7 cans @ 180ml = ~42 oz, so less than a quart, but the larger issue is the nutrition in Jevity, a corn syrup-based concoction that our bodies were not designed for. After all, you probably didn't start your day with corn syrup and water...

Many of us recommend trying Kate Farms, Liquid Hope, or RealFoods formulae as closer to "real food." Depending on your insurer, one or more is often reimbursable.

You can also replace commercial formula all or in part with, real food, blended smooth with liquid in a Vitamix or Ninja high-power blender. There are numerous Web sites and Facebook groups that share recipes, as well as those here. The best evidence at present is for a high fat, high protein, limited simple sugar diet so long as there are not pre-existing kidney or GI issues.
 

brucker1960

Member
Joined
Mar 15, 2021
Messages
12
Reason
CALS
Diagnosis
05/2021
Country
US
State
WI
City
Rhinelander
Thank you all for some great ideas. I would like to add some home recipes to his PEG even if he can't taste them. I'll look online to find some higher calorie foods that I can blend myself. I was already pureeing foods for him so I'll see what I can adapt for the tube. I do want him to conserve energy so I plan to convince him we can afford to hire someone to do our lawn now. That may take a bit of doing but I should be able to tell him to save his energy for fishing. That way he's using energy doing what he loves.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Laurie sorry I thought jevity was 237 ml per can. If not you still need to double your amount of fluid as she also gives 180 ml fluids with each can.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
definitely - think about how to put it across as a way of making wins for himself, not as a loss.

If you decided to add recipes that you blend yourself you can use high calorie ingredients like coconut oil and creams to boost up the calorie amount of a good nutritional meal.
 
Status
Not open for further replies.
Top