I remember about 6 months after my mom passed, I regretted not making her corned beef. When she was sick, she allowed no talk of her not recovering, even when she was in hospice. I’d make her food, and she would say it didn’t work with her fight cancer diet. She always ate very healthy, but loved corned beef every Saint Patrick’s day. I think she would’ve eaten it, high in protein, fat and sodium (she hated those pills, her best friend got her drinking salty broth instead). We did something odd, had a living wake, she was so social and had so many ties in the community. She passed either that night or the next. My FIL is 96 and hanging in on a thread. His “little” brother is coming in from across the country to say goodbye. We think he’s hanging in for his 95 year old wife (they live at home). It’s still not easy. What you are going through is so hard, and not fair.
This is so hard and I’m so sorry. I can relate pretty well. I know you didn’t specifically ask for advice but in just in case this helps at all…
Morphine depresses the appetite (not to mention constipation which can also be a problem). Feed him what he likes, calories are your friend. If he likes ice cream give it to him. There are several high calorie/protein drinks available and you might want to look into those. I can give suggestions if needed.
You said a sodium pill? Could that be a potassium pill (those are huge)? Many meds (as mentioned) can be changed to liquid form (but sometimes not as readily available at the pharmacy–some are more expensive in a different form).
Many meds (like potassium pills) CAN be crushed even though the package insert says to not crush them. My dad had a terrible time swallowing pills so after research (and even calling the company in a couple cases) I crushed a good number of his pills. Just made a little slurry he could drink.
Smaller ones he swallowed with pudding (worked better than applesauce).
Vitamin pills (also huge) we dissolved in a shot glass of coke.
I’m a pharmacist (not a doc) but continuous cough can be caused by acid reflux (as well as other things). Acid reflux also makes it difficult to swallow. Out of curiosity does he take any meds for that (like Prilosec or Nexium) ? (There is also a chance that if he does take omeprazole that the cough could be a side effect).
Heart failure will also cause cough as fluids build up.
Persistant cough can also be side effect of some blood pressure meds.
I’d really have someone look at his meds to see what can be discontinued.
Thinking of you and your family, snowball. May your efforts to tend your husband, be there with your children and navigate the challenges and grief be a comfort to you always. I found some amount of enduring peace in having walked this most difficult of walks closely with loved ones. Sending warm thoughts.
@gouf78 Helpful information; thank you. The cough started after we both got a virus from 4 year old GD who was staying here for 10 days while D and family were moving to our city and waiting on their new house to close. While I have a tiny tickle in my throat, his has lingered. When on the morphine, he doesn’t cough, but the hospice nurse said his lungs are clear, and he says it is at the back of his throat. While he never had acid reflux, nothing would surprise me. He also never took meds for diabetes (due to the steroids) or high blood pressure, but here we are; the only thing he took before getting sick was a thyroid med. He has been on sodium chloride due to low sodium levels, and before hospice, he went on and off of that as labs were drawn daily in the hospital, and weekly, when home. Yes, these tablets are huge!
We have talked about which meds to drop as the time comes; not sure we will go the liquid route. Right now, he has been ok swallowing them; it was just that one pill this morning that seemed to give him trouble.
As far as foods, he decided once he got sick that sweets were his friend! He dropped vegetables from his diet, and added lots of cookies and ice cream. Up until a week ago, he would request certain foods, now he doesn’t say much, so I just make what I think he can/will eat. My mother just made her lima bean and barley soup that he loved when I said thicker soups worked were, at least today. I remember at the end, all my dad wanted was ice cream, and my mother said he couldn’t have only that for a meal. The Palliative care doctor explained to us that food was love, and that mom wanting to fix him her hearty meals was out of love.
Has he tried marijuana? My mom was very anti drug use, but her attorney (who had had cancer) convinced her it was a game changer. This was back when only medical use was legal in NJ, and it turned out her doctor was actually one who could legally prescribe it. Unfortunately it was newly legalized and she passed 4 months before her first appointment, but her hairdresser (and later us) hooked her up (I drove her over and he came out with the bag and pipe). She hid it from my dad, and would whisper to her friends that she was on the marijuana, it was cute. It helped her tremendously with eating.
My dad loved pancakes and syrup, yellow beans, and gingerbread. Like your husband, swallowing became increasingly difficult. But one morning , he started to seriously choke on his pancake (he was very weak, and the hospice LPN was feeding him tiny bites) .
She got him Heimlich’d, but no food after that, even liquids were an aspiration risk. His morphine was by vial under the tongue after that.
I am sorry this is happening to your family. It’s wise to limit visitors and covet the time you have together, even if it is just to sit together. You are doing a good job of being a devoted spouse; as
others have said, let your children care for you when they can.
Watermelon can be a good option. It was the only food my mother liked near the end, when she turned down her favorite ice creams (even when melted)
My FIL couldn’t swallow toward the end. We bought squeezable baby food packets, and he was able to handle those for awhile. Eventually, he just didn’t want to eat. My MIL is still able to eat, but she no longer wants to. It’s tough to know exactly what our loved ones will/won’t, can/cannot eat. Like with pretty much everything else, we just try our best.
What sodium pill is he taking? Most are to be dissolved in water first
Whats the dosage? Perhaps chicken broth can be substituted.
That became my mantra.
Only mine was " You do the best you can with the information you have at a given time.
No matter how things turn out or what you do or how hard you work there will always be some amount of “if only” and “maybe if I…” or “if only I’d known”. Let it go.
My husband was in hospice and I can recall trying to find something he could eat.
Now I think maybe it would have been better not to worry too much about it, which I would also say about the meds.
If the food or meds do not provide a life extending benefit, perhaps it is better not to struggle over them.
So true. Sometimes you can get so focused on the details and “doing something” or following a medical plan that you forget the big picture. The big picture is to enjoy those moments you have together and not turn things into a struggle with no winner. And sometimes you (as the caregiver) have to make those hard decisions because you know the patient best and love them the most.
But it’s so hard. Is this the last thing he’ll ever eat/see/say/hear? Do I do what X wants or what Y wants or what I want? Do I do what I want or what loved one might want but I can’t tell. Can he hear me? Can he see me? Did I pay the phone bill? Should I get some sleep or stay here? All things I found myself wrestling with, and that’s with totally supportive family on all sides.
There’s so much to navigate and so little time, and nothing in our experiences to really transfer to end of life days. Just try to think about what you can look back on with comfort (I read to my dad in his last days; I honestly don’t know if he could know I was doing that, but now it makes me feel less sad to know I tried)
You hit it all. The lack of sleep, the mundane but necessary “did I pay the bills”, so much to work through. The guilt of not doing enough with so little time. Wanting to be there 24/7. Being afraid of failure on all fronts.
Maybe not everyone feels this way but my final feeling was I had a lot of years with my loved ones prior to their sickness. They knew I loved them and I truly think that no matter my mistakes in their care at their end that they knew I loved them and did my best at the time.
On a very personal note–my dad loved me reading to him…but it was the WSJ.
One good thing I did was call family early to come visit. Maybe earlier than needed but still in good time to have a meaningful visit. It made a huge difference.
I am not and have not been in this situation, but all of you are providing so much common sense and guidance.
My mom loved opera so D subscribed to an online opera service and watched operas with my mom multiple times in the final weeks of her life. It was a nice connection for all of us.
It’s the being there and little things. My mom started having a hard time swallowing too, so they crushed her pills and put them in applesauce or pudding. Her appetite was rather unpredictable as well—sometimes she’d eat and sometimes she wouldn’t.
@snowball and everyone dealing with ailing loved ones—sending you positive and nurturing vibes. This is hard, but you are all doing your best.
I hate saying this aloud, but my husband is dying, and we all know it. When he gets to the point of not being able to swallow his daily meds, we will just stop them. If he doesn’t want to eat, we will give him what he wants; if it is only Diet Coke, or ice cream, that is what he will get. Lately he keeps saying water is gross when he drinks out of his water bottle, but he keeps drinking it!
His confusion and hallucinations are getting worst, but we are dealing with those as best as we can; at least he is not agitated like he use to be. He scared our GD last night as he was crying saying she had disappeared when she was right here. He wouldn’t open his eyes to see her, and she kept saying, here I am. We got him settled, but that was the first time she realized what was happening. We told her he just couldn’t see her, so thought she went home. She seemed to accept that in her 4 year old mind.
A previous medical assistant of his send me a beautiful email to read to him. I though this morning would be a good time after a good nights sleep. When I told him she sent this, he didn’t remember who she was, so I will try later today.
Hugs. One moment at a time.
My dad did not know who I was, or my mom, but he knew her voice even though her face confused and enraged him. So when he was unconscious/asleep, she could talk to him, but not in the moments he was awake. That was hard.
I have nothing to add but positive thoughts for you and your family as you make it through this very sad journey.
He is lucky to have you help him through his final journey.