Another Bad Day

[JohnnyMags]

Well today I just feel like I need to vent. It is so inspiring reading how people are coping with this terrible disease. I just wish I could see or feel something positive in my wife's case. Unfortunatly my wife seems to have everything go against her. Anyone who has seen some of my posts knows my wife has had issues with lack of appetite, food tasting bad and constipation. If all that isn't enough she has always had an exceptional sense of smell and that adds to our unhappiness and her poor quality of life. She smells everything and in this case that's not good. She just told me today she smells soap residue on items out of the dishwasher and she said this has been going on for awhile. She has no desire to go out mainly fearing she will need to use toilet (#2) as she feels like she has to go a lot ... Sort of reverse constipation. Dinner out doesn't appeal to her either due to food tasting bad (smell probably doesn't help here either).

Reading how this will progress is so sad especially when she's having such a hard time now and the bad stuff hasn't fully kicked in yet.
She said early in this diagnosis she didn't want to live like a vegetable. I know there are those of you that will say there's still quality of life being paralyzed but I don't think she feels that way. The other side to this coin is I can't bring myself to being part of her demise. I want her wishes to be met but it brings me to tears thinking of losing her. This is such a lose lose scenario I can't bear thinking of a life without her but am I being selfish? I want her here but I'm not the one suffering.

Sorry for the depressing outlook but it's all I think about and today for some reason I feel especially bad.

 

[lgelb]

Maybe try going out when you are within a short travel time of home? Then as she gets more experience, you might venture out further. Or she might feel better going out just after a BM.

There are dishwasher soaps that are less scented -- being sensitive myself, I use a pod that is "unscented" called Beyond. There are unscented versions of every product I can think of related to ALS. We also have a fair assortment of air purifiers and fans near the kitchen and elsewhere, and of course, are now getting into weather where open windows are more pleasant.

Going out and getting fresh air/sunshine/intellectual stimulus is healthy and often improves happiness in a number of ways.

As far as what your wife feels, the only way to know for sure is to ask her now and whenever you are not sure, ask her again. This isn't an area where I would speculate or make inferences.

I think many of us found the "positive" in just living with ALS, not despite ALS. I do not mean giving a disease all this mental power where you are "fighting" all the time. That would be emotionally exhausting for most people. I mean doing or experiencing things the same way or differently, but still adapting or replacing them, seeing them, feeling them, hearing them, living as fully as possible in that moment, as you have before.

Very few PALS could be said to live as "vegetables." Very few are completely "paralyzed." For example, most can still breathe with assistance, use eye gaze to communicate if needed, etc. I encourage both of you to learn more about what is possible even with the level of mobility impairment that many PALS reach, understanding that not all PALS reach the same stages before passing on and there is always an off-ramp. But there is no point in spending the rest of her life eyeing the off-ramp -- that, as you point out, is not a good use of whatever life remains.

Often there are ways to address the fears concretely. But when there are not and her wish is for passing on, as with anyone that is mentally competent that that you are helping to care for, the answer is simple -- you do what she wants, not what you want.

 

[JohnnyMags]

Thanks Laurie I appreciate the advise and it all makes sense but my wife can be difficult at times. She seems to want to just live in her recliner and the bathroom. I have to tell her to eat, and move around .... I even have to tell her to put the Bipap mask on. (we just got that 4 days ago and she's trying to get use to it.) It's not that she doesn't care I'm sure she wants to live now but she doesn't want to go out and do anything.

I will definitely look for unscented products to help with her super power of smell. I do think a lot of my wife's issues are anxiety related .... I will bring that up at our next clinic meeting next month. I do feel overwhelmed as we go through this adventure between all the housework and cooking and also trying to learn what to expect as well as trying to look into all the things I have to do for ALS. One thing that I am having a hard time dealing with and that's not knowing if wife is in pain or struggling. I ask her about 2 dozen times a day if she's OK but every time she says she's ok even though she doesn't look it. I knew we were in for a rough ride when I heard ALS but I didn't expect it to be so depressing.

 

[lgelb]

She may still be in denial even for herself and before clinic you might want to bring up the possibility of trying an antidepressant and/or counseling (even via text or video) as well so that issue can be on the table. And that kind of brings up, how does she want to live the rest of her life, a path that is hard to see when all is dark.

And you can just let her know that she can tell you or ask you anything -- probably no point in checking in 24x a day -- that seems like it might get old and depressing in itself.

 

[Lori7]

Yes, having to go to the bathroom when you go outside can be a problem. I have tried many methods of transferring in order to go to the toilet more easily, but I can’t manage any of them except the hoyer lift. But getting hooked up to the lift isn’t fast enough and I go before I get to the toilet, not to mention the nuisance of putting me on the lift ten times a day to pee. So I am in diapers now. Diapers are really not so bad in some ways. In your wife’s case, maybe she would feel more secure if you put a diaper on her when she goes outside, and she wouldn’t have to worry about going by mistake. It is very important to go outside for her mood, and to get the sun in her eyes. I think it also helps with sleep. Sometimes people can be just too depressed to go outside, feeling that it’s too much trouble, but reassure her it is not too much trouble. I’m not sure if your wife is in a wheelchair, but you can also buy a waterproof or absorbent pad for the wheelchair. As for constipation, sometimes the mild daily laxatives are not strong enough, and she might need to take two senokot pills, but only maybe once a week so as not to get too dependent on them, while taking a mild one on the other days. If you spray glade it might help with smells. Hope this helps.

 

[MollyJennie]

Hi Johnny,

I am the sole local caregiver of my mom who was diagnosed with ALS in December. She was experiencing mild symptoms unbeknownst to me since the prior March. Then an unrelated ankle surgery in June caused a quick progression of her symptoms and then still took from August to December to get diagnosed. My mom is a nurse and understands the reality of this disease. It is so incredibly depressing AND we needed to find a way to not live in that mind set. We can visit, have feelings, get overwhelmed but we can’t live there. My mom after much protest got a therapist that specializes in terminal illness. Sometimes a session last 15 minutes and sometimes 40 just depends on the day she is having but it has helped her shift her mind set and she thanks me every week for “making” her do it.

It sounds like your wife isn’t at that place yet. (Took us a long time to get there) and honestly it’s back and forth for us. My mom is losing her arms first and for her (for all of us) it excruciating. And it’s the cards we been dealt. No one deserves this horrible disease and after 47 years of nursing and being half a year from retirement this was the last thing any of us expected for her. So it’s taken and is taking a lot of adjustment. She is anti invasive respirator for herself. The BIPAP has been an amazing tool. She was very resistant to using it at first but we had a bucket list concert she wanted to go to so we made a plan to make it happen. Strategically used our BIPAP and naps and food and neck brace (all of which she normally hates) and it allowed her to have this experience successfully. That is what shifted her mind set on using the tools. Sometimes she still doesn’t want to and those days she feels terrible and then The next day we get back on track and things are a little more comfortable.

Regarding the smells. My mom is the same way! I wash the dishes by hand. Smell them to make sure all are clean and scent free before having her use them. We also use recycle materials (environmentalists over here) paper plates and that’s helped a lot. They are lighter which makes them easier for her to eat off and never smell like anything. Maybe that would help?

Regarding appetite and food. I follow her cravings. It’s insanely time consuming but it’s worth it for me if she eats. I’m working full time and exhausted but she needs the calories. If she wants chocolate cake with butter cream frosting she gets it. She wants a steak dinner we have steak, she wants egg noodle and peas and chicken. That’s what she’s getting. It’s not practical or efficient but it is effective. She’s lost weight much slower than in the beginning and put on a little weight at one point. I know not everyone can cook or do this financially. We are not well off by any means but I have been making it work.

I tell my mom this, you don’t have to be toxic positivity lady, you need to feel your feelings and we can’t be hopeless. We gotta find things to look forward too and everyday has a lot of bad so we are going to find one glimmer every day. Every night before bed we share glimmers. Some days have lots and some days have very little but there is always one. Could be a friend stopping by, something she ate, a excellent cup of coffee, some ridiculous part of the day we laughed at, getting fresh air sitting outside even if it’s just outside the back door, my cat being cute. Whatever it is! Sometimes I manufacture glimmers, text friends asking them to call her, arrange drop bys, buy cozy socks or a face mask.

Regarding the bathroom and going out. I help my mom. It was really emotional for her at first but now it’s just our new normal. I know with a partner that might be different. On days im out of the house and a trusted nurse friend is going to be with her she wears depends just incase she can’t get there in time she can toss them without having to have the friend completely change her. She cannot pull any undergarment or pants up by herself so she has recently gotten used to other loved ones helping her. An aunt visited a few weeks ago and she did agree to let her help so I could take a small break. She still won’t let my brother when he visits but we are working up to it.

I’m not sure if this helped but it’s also just not easy watching someone you love so much go through this. I’m having a really hard time and I know it’s scarier for her so just trying to balance crying with her and validating her feelings while also not letting us succumb to the despair. I also have a therapist and call my best friends mom who was a caregiver for her mom when I was growing up when I’m freaking out. It feels very isolating as a care giver being in it but honestly it’s the best and hardest thing I have ever done.

I just want you to know I know the feeling of panic when our PALS is depressed and feeling hopeless and I’m so sorry this is happening to your family. Sending love and care. I hope any of this helped at all!

 

[KimT]

My home is fragrance free. All the products I use are non-toxic and don't smell. Recently, I went to a place where they used Dove soap and I could smell it everywhere. It triggered a migraine.

I use glycerine liquid suppositories. If I'm leaving the house, I use one and that's all I "go" for the rest of the day. It takes less than five minutes to work. They are not addictive and were recommended by an gastro whose Mom had ALS.

 

[Firefighter58]

Hi folks, for what it’s worth I spent my first few years with this terrible disease at home with my wife having to lift me out of bed and lift me to go to the toilet, and lift me to go outside, and lift me to go to my appointments, lift me to go to the clinic, you get the idea. My wife is not a big person but I am, so it was very hard on her we solved the problem with a nursing home, I have been here for 4 years now and It is far easier than home, the people here are totally professional and know how to do everything. There is a nurse on staff 24 hours a day and a doctor once a week but on call 24 hours a day. This is the best thing to do with the disease my wife visits 2 or 3 times a week and other then that she is free to do as she pleases. I have many friends in the home now and I am free to do as I please. It’s not home but it is second best to home, I am confined to a wheelchair but so be it I have slow progression so I highly recommend a nursing home my wife and I are in our 70s
Al

 

[JohnnyMags]

It's so nice just to be reading other people's experiences and ideas. Some I will try others I know won't help my wife for one reason or another. I wish you all the best with your situations too. None of you deserved this nor did my wife Marie.


Laurie - I don't think she's in denial but you may be right. As for anti depressant we are both on a generic for lexapro (Escitalopram 10mg). I believe my wife was on that prior to her diagnosis so maybe she needs a stronger dose. As for the therapist I explained my situation with one here a week ago. I intend to take Marie with me next week this therapist knows all about us and our situation so she will have to do for now.

MJ - I do a lot but it sounds like you have me beat with the things you do. It sounds so nice and comforting the question is how does your husband or significant other deal with losing so much time? Finding things to look forward to sounds nice but my wife has trouble in that category.

Lori - We have depends but we have yet to use them. They seem like a good idea when it comes to peeing but to do the other isn't a pleasant thought for her or me. Don't get me wrong if I have to clean that I will without doubt. But it's the effect it will have on her not being able to do for herself that will have her extremely hesitant. I would love to find a therapist that specializes in terminal illness patients. like you mentioned. I'll see if I can find one but that seems easier to said than done.

She hasn't cried in front of me very much since our diagnosis (I've done a lot more than she has ) but tonight our son and our two granddaughters were visiting (they come once a week). One is 5 and the other 15 months. I was reading to the 5 yr old and the baby crawled out of the room. My wife started to panic yelling for me to get the baby. I said I need a minute to get the big sister off my lap. When all was restored to normal my wife started to cry saying I can't do anything anymore. That is so sad and it made me very sad. I told her to let it out and it will get better to which she replied "I'm not going to get better". That was heart breaking and it had me going emotionally, it's so hard finding something to be upbeat about.

 

[Nikki J]

Have you explored palliative care? They might help fill some of that need for guidance in navigating terminal disease

 

[JohnnyMags]

Nikki - Glad you brought up palliative care it's on my list to discuss next month at the clinic

 

[JohnnyMags]

I have to reply to Firefighter. You certainly have a unique situation. If your happy with it as well as your significant other that's fine but that is not something I see myself doing.
First a nursing home is rather expensive and although we are comfortable financially the high cost along with the unknown length of stay pretty much takes that off the table.
Next if she was in a nursing home I would be wanting to see her every chance I could. The time you say she is free to do whatever she wants is when I'd be with her because that is what I would want, not just 2 or 3 times a week.
I'm glad you find your arrangement satisfying and I hope you live a long while but your arrangement is just not for me.

 

[rmt]

JohnnyMags, as you continue on this journey, give yourself grace if you start feeling things you never could have imagined. From the moment I met him, I wanted to spend every minute with my husband. We always used to say we would rather be anywhere together, than anywhere else apart. And it was true (and honestly still is almost 3 years since his passing). But by the end of his journey (bulbar ALS with FTD), I was so exhausted that at times all I wanted was a few minutes alone to rest. Being with him meant taking care of him, not spending quality time together. I still loved him with every fiber of my being, but my God was I so tired.

It has taken me a long time to forgive myself for wanting a break from caregiving. I wish I had gotten more caregiving help so that he and I could have spent more time together just as husband and wife, and not as ALS patient and caregiver.

Caregiving is the most exhausting thing I've ever done, both physically and mentally. There may be a time when you need a break, and that is OK.