Dealing with anticipatory grief...

[Hubby caregiver]

First time in a forum! I'm not sure how to start this but...

I am the caregiver to my wife and we were diagnosed on June 6th, a month ago. BTW I have been using the royal "WE" when it comes to my wife's health for a while now. Margarite (not her real name) was diagnosed with Crohn's disease in the mid 80's and in the last 2 1/2 years, has had 2 serious bowel surgeries; the first one, a resection had many complications and the last one resulted in an ileostomy. So needless to say that an ALS Dx on top of that is like the sh*t cherry on top of the sh*t cake for her and for us.

According to my googling, her condition is progressing rather fast; last November, we were hiking easy trails in the forest with the dogs; and today, we drag our left leg inching our way down the hallway with the walker and confined to a motorized chair for any type of outings. Her manual dexterity is starting to be affected as well. ................ I could go on and on about her condition..... but

I told myself that if I am going to "seek help" on an online forum, I was going to do it for ME. I know, it sounds selfish and, in a certain way, it is. Everyone tells me to take care of myself and taking care of oneself as a caregiver, is easier said than done !

So here I am with this Dx and I am finding that I need help; we need help. To add to my fear of the unknown and my frustrations, Margarite is not as active in her treatment/looking after herself as I would like her to be. She has not pursued her appointments with her counsellor, her psychiatrist, her occupational therapist, physio, etc for the last 6 weeks (even through Dx) but has watched the first 6 seasons of Grey's Anatomy on line. Every day, she seems to gloomily focus on the "look what I can't do." She has barely glanced through the ALS Society website, the services and the support they offer; or read through this forum. I can only imagine what is going through her mind as her abilities continue to diminish and her dependence on my assistance increases.

Many of our discussion about the Dx or the future end up in tears; understandably for both of us. She is concerned about my physical and emotional health and terrified at the thought of being more of a burden to me and the rest of our family and friends. Friends are quietly disappearing leaving us alone to deal with this. I don't think she has completely dealt with the whole situation yet, and I feel she is not making the best use of the precious time she has been given.

What help do I need? I don't even know !!! I am getting more and more physically and emotionally tired. The necessary legal/insurance tasks ahead along with her "before I die projects" are daunting. I am fortunate to be a teacher so I have the summer to be at home with her. We are planning an ambitious trip to the Canadian Maritimes later this month. We will see how this goes.

The future does not look very bright sometimes but I try to stay strong for her and I try to make it one day to the next.

Thanks for listening to my rant, if anything...

Bruno.

 

[Jhill]

So sorry to be welcoming you here.

My husband was diagnosed in March and is also progressing rapidly. It's so very hard to stay a step ahead when it moves so quickly.

Have you checked into your local ALS Association. They are wonderful with equipment needs and also provide counseling for caregivers, along with support groups. They have been great at answering all my questions about future needs.

Do you have any family members that can give you an occasional break?

Also, the members on here are wonderful and will answer any questions you may have.

Joan

 

[Hubby caregiver]

Thx for your response Joan.
Yes. Family is around and participating 2 daughters, 3 brothers her 92 y.o. dad and 13 y.o. grandson. Time by myself has to be planned long in advance. I will get some time this summer but the disease will still be there when I come back... :-(
As for the society, I got the phone number on my cell. Just gotta make the call...
B.

 

[Atsugi]

Bruno, your story sounds very familiar in many ways.

Welcome to the forum. This is a wonderfully supportive group of positive people. Our folks will support you forever. Our real life friends often (usually?) abandon us--they don't know how to fit in to this weird and terrible situation, so they back off. ALS has been known to destroy families, to. Be very patient and understanding, to maximize the possibility that those who leave will someday come back.

I read your posts and have a few observations at random:

Although your daily thoughts and actions are, of course, dedicated to your wife, your PALS, who will increasingly need help both physically and emotionally, you are right to remember to take care of yourself. This journey is quite physically demanding, and you'll lose a lot of sleep.

Another reason you should spend time thinking about yourself is, quite frankly, because you are going to be the survivor. You need to carry on life, you need to afford to live, you need to maintain your living and your career. As painful and conflicted as it seems, you need to spend time each day planning for the day when she is gone and you need to carry on.

How old are the kids? How old are you?

PS: I'm going to move your post over to the "Current Caregivers" subforum so you'll get more readers.

 

[affected]

Welcome Bruno, the first couple of months after diagnosis are such a surreal time for both of you. I'm glad you have joined here, tho very sorry you had the reason to.

We will help and support you however we can xx

 

[Hubby caregiver]

Hey Mike,
I am 51, my wife is 59 and the girls are all grown up in their mid30's. My wife and I are alone at home with our two dogs.
As the ALS continues to progress, there will come a day that I will no longer be able to take care of her in our little house. I can only imagine the guilt and selfishness that I will be feeling when that happens; knowing very well that the day she goes to a care facility, she will likely never set foot in our house again. That will be a hard day...

I try to do something selfish each day to prove to me that I matter. You are right, I will survive this and I think I will be a better person because of it (however emotionally wrecked).
B.

 

[Narrowminded]

Hi Bruno,

So very sorry you have joined us here. You are still in the "take it all in phase" A hard place to be, but one that will pass. We are into our 12th year of this dreaded disease. It took us 2.5 years for a dx, because like your wife, my DH would not make his appointments because he didn't have time for that.

One of the things you will want to talk about is what measures you want to pursue. My DH chose to vent and I know that is why he is still here. That was 6 years ago. He is and has been completely confined to bed and 2 years ago lost the ability to eat, which brings up the next possible intervention. That is a PEG tube. That is used for food and meds (if necessary) when they can no longer safely swallow. We had DH's placed when they placed the trash, so only one surgery. Prior to the vent he used a bi-pap to help with his breathing. These are just a few things to think about.

DH has stayed here in the home as we could never afford placement, but since we are both in our 50's, have a little too much for the gov't to take care of that for us. I'm fortunate at this moment to have health insurance that covers private duty nursing for part of my days during the week so I can still work. This is something else you should look into.

I've thrown a lot at you all at once. Take you time to digest it. However, the biggest thing I suggest and in my opinion one of the most important is to enjoy and live each day to the fullest. That way, no regrets.

We are all here for you.

Sue

 

[affected]

In the General Discussion about ALS section we have some stickies on dealing with being newly diagnosed and anticipatory planning.

Just read what you are ready for (I scared myself stupid in the early weeks by researching and reading far too much information!), and know that there is a wealth of information here to search for, and real people to ask questions from as well.

 

[soonerwife]

So sorry you find yourself here. We understand, it is soooo difficult and frustrating and hard and sad. The list goes on and on.

I too wish my PALS was more interested in his care. He doesn't want to go to the clinic. He doesn't want to use the triology. He isn't ready for the feeding tube...

It is so hard to watch. It is hard to let them make the decisions when you think it's not the best decision. Ultimately, it is their health and their life and they need to feel like they have some control left when they are losing so much.

So sorry that this is such an ugly monster of a disease...

Just know, we are here for you.

 

[lgelb]

Welcome, Bruno. I am familiar with ALS as the cherry on top and sorry you two have been dealt that hand. It takes time to process, sometimes more for her than you.

But you are going to have to ultimately give up the ..."as I would like her to be" point of view and take care of her "as she is," in how she deals with this or anything else.

Best,
Laurie

 

[Loverly]

My sister and I were chatting today, and I expressed that there are three kinds of grief with this tragic disease: grieving over the diagnosis, grieving thru the illness and then the excruciating pain of the loss. Manage it as best you can, and just love each other.

 

[gooseberry]

Bruno, One very tougzh lesson I learned through my husbands journey is....I was support services. He made the decisions. I did the research, fought insurance, worked fulltime, etc. Basically I made it so he didnt have the extra stress of the paperwork. You wont agree with some of your wife's choices but you can only research things, give her all points of view, and accept her decision. Those decisions may change as things progress.

One suggestion...while she is still able to interact with you, leave all unneccessary tasks and spend good quality, non caretaking time with her. Watch a movie, look at photos, hold her hand and tell her you love her. Physical touch helps a lot. Steph

 

[Hubby caregiver]

Thx for the advice about my expectations, Laurie
I do all household chores with no expectation from her (I tend to be insisting on it for her safety). I find I get frustrated when simple task such as having her make phone calls, write emails, keeping paperwork and calendar up to date, etc are not kept up... but the next few episodes of Gray's Anatomy were watched...

I make a daily list of things to do; mostly for me but it can't all fall on me yet. However, I realize that eventually it will :-(

Went for an appt at the ALS Clinic yesterday. 2 hours of nurse, OC and PC. Good ideas shared, the proverbial ball has started rolling when it comes to equipment and exercise. Her brother and sister-in-law also came to the clinic. Went out for sushi. She always does well and looks good on those days but these good days usually come at a price.......two days of "recovery" (not doing too well this am)

Taking the good days and the not so good days in stride.

B.

 

[Hubby caregiver]

Steph,
To tell you the truth, I don't remember how to be a husband anymore, or at least the touchy-feely type. I, like you, feel like support services. Don't get me wrong, we still laugh and cry together, watch movies, watch Gray's Anatomy ;-) , walks, shopping, play with the dogs...

I will try one thing from your advice.... longer kisses (just an extra second,

One question for you: did you have to stop working through your journey?

Cheers,
b.

 

[Nuts]

Bruno, welcome to our collective nightmare. I'm glad you've found us and added your voice to ours.

I understand your frustration over your wife not tackling the things that don't require great physical effort, but want to give you something to consider. Currently it's believed that up to 50% of PALS suffer some level of cognitive decline, ranging from very minor problems with executive function all the way up to full blown dementia. Is it possible that your wife is suffering cognitive loss (or depression) and is truely unable to follow through on those things?

Some days are better than others for my husband. He still handles the finances, but there are days when things just wait and other days when much more gets accomplished.

Again, welcome.

Becky