Advice

Ask Ada: My First Christmas As A Disabled Person

Plus: dealing with the difficult decisions that come when a loved one enters hospice.

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Welcome to Ask Ada, Folks’ bi-weekly advice column for people impacted by health issues or disability. Want Ada to help you with a problem? Email Ada at askada@pillpack.com or tag @folksstories on Twitter with the #askada hashtag.


Disabled at Christmas

Dear Ada,

I’ve had a good career for years, and this is my first year being disabled because I can no longer work due to my disability. I’ve always been a saver, so I have some money in the bank. However, it’s meant to be my buffer for years to come, since I can’t just get a job and earn more. Everything about being completely disabled has been a process to work through, but I fear finances are giving me severe anxiety. 

For example, I’ve always been an over-giver during the holidays. There’s nothing I love more than decorating my house, having guests over, and buying for everyone, and I mean EVERYONE. This year, I know I can still decorate because I have the decorations, but I’m not hosting a party because it’s just too much work. However, I don’t know what to do about gifts. I feel like people will still expect big gifts from me, but I don’t think I can deliver. I can’t go out to shop for them, and I don’t know how much money is safe to spend. What should I do? I don’t want to skip the holidays completely.

Not-Scrooge

Dear Not Scrooge, 

You mentioned that everything that’s happened since becoming disabled has been a process. That’s going to be true of your finances too. You’re going to have to figure out how to manage your finances through many different circumstances, be it holiday spending, birthdays, one-time events, such as weddings, emergency situations, home and auto maintenance, paying for medical treatment, and more and more and more. Eventually, you’ll begin to see places where you can save more or cut back on some spending. Over time, you might gain more confidence in knowing how to budget for these types of events. 

You mentioned that everything that’s happened since becoming disabled has been a process. That’s going to be true of your finances too.

But since this is still so new for you, my suggestion is to pull back this year. I know it will be tough to rein in your spending because you truly enjoy gift giving, but the early stages of not working is how you’ll determine what your budget is, so it’s best to tread cautiously.

Here are a few ways to give without overgiving: 

  • Plan a gift-exchange with your family and friends. With this approach you’ll only need to purchase for one person, which will give you some leeway to spend a little more on their gift.
  • Purchase presents for your small immediate circle and bake something for the rest of the people you normally give to.
  • Craft, craft, craft! There are so many ways you can create gifts in a frugal manner. Can you make everyone an ornament? How about scrapbooks for some of the closest people to you?
  • Set a monetary for each person and then challenge yourself to shop online sales until you find the perfect fit!

Finally, setting expectations is key. If you’re worried that people will expect large gifts from you, have a heart-to-heart and explain your situation. Let them know you want to spoil them, but you’re concerned about your finances since you’re no longer able to work. The holidays are about celebrating the love we have for the people in our lives. They aren’t for trying to prove that love with presents. By being truthful and setting firm expectations, your family will understand that your concerns are valid.

Plus, it’s about time they start spoiling you!

Female nurse is taking care of the senior woman

Hurt and Confused by My Grandmother’s Hospice Care

Dear Ada,

I was studying abroad when my grandmother, who had Alzheimers passed away. My parents kept me updated through her brief stint with hospice, and because we are not religious, my family chose to wait a couple of weeks to have a memorial for her so that I could be there, which made me happy. Though, at the memorial, I learned that my parents made the decision, with the help from hospice, to stop feeding her in the last few days. Why would they do that? They told me she wasn’t remembering how to swallow and that the food was simply prolonging death. Does this sound right? I can’t help but think they starved her!

Grieving Granddaughter

Dear Granddaughter,

It’s awful to imagine your grandmother’s last days as being starved, but rest assured, what hospice and your parents decided was the best course of action. 

Often, people with Alzheimer’s who are at the final stages of life will have difficulty eating and swallowing, as you mentioned. To help them get the nutrition they need, the Alzheimer’s Association suggests adapting food choices to soft foods or a liquid diet instead. Though, at the point of hospice, even liquids may be difficult to swallow, which increases the risk of choking.

In addition to how difficult the actual process of eating can be, there are a few different reasons why someone in hospice care would go without food. First, when a person’s physical activity dwindles, their body requires less and less food — fuel — to keep it functioning. 

Second, and potentially the toughest to hear, when a person is dying, the food they consume helps to sustain their life. When a person’s organs are beginning to shut down and death is imminent, continuing to fuel that body only prolongs life, which could also mean prolonged suffering. By removing fuel from the equation, their body is able to complete the process of shutting down.

There’s one more thing I’d like you to consider, and hopefully this will help put your mind at ease with your parents’ choice: very often people who are at the end of their lives — for any reason, and not just Alzheimer’s — will often stop eating on their own. Food may lose its taste, become too hard to eat, or may be constipating. 

It is their caregivers, whether that be family members or medical staff who will encourage them to continue eating, either by taking over the process of feeding them or inserting a feeding tube to get them nutrients. 

I hope you’ll talk to your parents about their decision in more detail. Your grandmother could have lead the way by beginning to refuse food on her own. If this was the case, your parents were simply following her lead.


Are you facing a problem that is being complicated by a health condition or disability? Folks’ advice columnist Erin Ollila wants to help. Email askada@pillpack.com and tell us your problem.

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