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KayKay13 Asked March 2017

Should my grandma (91) with Alzheimer's travel long distances?

My Grandma is 91 years old with Alzheimer's. She doesn't know her own name half the time, is a sundowner, and gets delirium and hallucinations. She gets worn out very easily. Even just sitting up for twenty minutes to eat wears her out. In about 2 months my sister is graduating college. The drive up to her school is a little over 10 hours, and it's going to be for 5 days. Going there, three days for graduation and moving her out of the dorm and into an apartment, and then going back. I'm concerned about her going, because she hasn't been doing good. Not to mention that she get's lost in her own house. Now take her to a big city that she's never been too before. I'm just scared it's going to be too overwhelming for her. I don't think it's a good idea for her to go, but everyone else thinks that she can do it. That "she can just sleep during the traveling and at night time." Is it possible for her to go, or should I stick to my instincts and not let her? I'm only 21, and I have very little experience with traveling with elderly. I do know that's a hard trip for me, let alone someone her age. She really want to go, but at the same time she doesn't even remember unless someone reminds her. What do you guys think?

gladimhere Mar 2017
You say she has less than a year. Is she on hospice? If not get her evaluated. When on hospice, Medicare will pay for respite in a facility to give family caregiver a break. Get a POA for her that will do the job! It is a big and difficult job!

And DO NOT take grandma to graduation.

Shane1124 Mar 2017
Great answers above! No please don't have her travel all that distance and for so many days. It will not be good for her.
You are so young to be in this position. You have plenty of time yet to put your energy into obtaining some sort of education whereby you can draw on your caregiver experience. Please look into community colleges or training for a CNA or even nursing. You can do a lot of classes on line these days. Community colleges are affordable and you can schedule your classes around your home responsibilities.
It does distress me that no one in your family realizes that you have a life too. Now is the time for you to shine- your sister is graduating; what about you? It's not selfish to want to make something of your life. Have a family meeting and assert yourself as you have needs too.  Down the road if you don't have a career you indeed will be stuck with nothing- no SS, 401k, etc. Your older family members have lived their lives according to their choices and decisions- it's time for you to assert your own.
21 is so young! Grab your piece of the world and start now. Life is too short for could have should haves and would haves.
Get your family involved! You weren't born to take on this responsibility alone. Speak with her POA & get him to step up to his responsibilities.
Good luck to you!

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Sunnygirl1 Mar 2017
If you need respite care and your grandmother can't afford it, I'd call to your local senior center. I'm not sure which state you are in, but, in my community, the local Senior Center told me that they provided FREE respite care for families who needed it. I didn't inquire the details, but, I think she meant like for a reasonable time, like a week or weekend. I'd call around to see if there is anything like that available.

While your devotion is admirable, I'd seriously consider if a longtime career in caretaking will offer you benefits. I know people who have done that and when they get older they have no retirement, since they haven't paid social security and have no 401K. I'd consider locating a paying position for the future if that is your passion. God bless you as it's a very tough job.

AliBoBali Mar 2017
No. This sort of travel left my otherwise-healthy centenarian grandmother with a bruise on her face (she likely slept with her face against the seat belt in back seat) that started an APS investigation 6 years ago. It's a bad idea to have an elder do this. It could be seen as abuse.

notrydoyoda Mar 2017
KayKay,

Your grandmother's son who is POA out of state is not fulfilling his role. He needs to be told to take responsibility . You would need to talk with a lawyer to see what legal consequences he could face for not doing what she trusted him to do.

Also, you don't live in your great, great grandmother's time. This is a new day where people can make choices. I think you've been groomed since childhood for this role. How did your sister escape this?

Take care of yourself for no one else will.

Veronica91 Mar 2017
Definitely NO. Even if she tolerated the trip she would have no idea why she was there and it would like increase her symptoms.
Have you considered Hospice?
You say she may have little time left. how do you know that? Has someone given you definite diagnosis and timeline. many people with severe dementia can live for many years.
i agree with others that it is high time you began caring for yourself. What is going to happen when grandma dies? Will you then become your Mom's caregiver?
While I agree with the concept of family caring for their elders, who will care for you when you are old and penniless? you will likely be unmarried and childless. Contact the Uncle who has POA and let him know you have to have help. this is a very different time than when people made those commitments and large famillies were the norm. If you want to be a caregiver and possible work with hospice patients you will need some kind of training in the healthcare field. Volunteers don't get paid!
Find a way to go to the graduation alone. You have a sister why has she not been taking her share of these perceived family responsibilities? Why is she graduating from college and not you?

Countrymouse Mar 2017
If you're technically minded, see if the college will be streaming the graduation ceremony online and you can fix it to show on your tv at home. Not pretending I could do that myself, but I'm sure a young person like you can!

Ten hour drive, five day stay out of familiar surroundings though... I'm sure you know better than I do that this would be really unfair on your grandma. Who is the "everyone else" who thinks she can do it? Not anyone with recent experience of looking after her, surely.

freqflyer Mar 2017
KayKay, many times older people will refuse to place someone in a continuing care facility because they remembers a half century ago that such places sadly were asylums, not a warm fuzzy place. They have no idea that today's nursing homes are soooo much better.

If your Grandmother can be accepted for Medicaid, what is great is that she will get around the clock care by Staff  in a nursing home who work their shift and get to go home and sleep through the night [or day] and wake up refresh for the next shift time. And Medicaid will pay for your Grandmother's care.

It's time to break the no nursing home rule, or you will find yourself as you did as a child, not having a regular childhood because you were helping out elders all the time. You will find yourself always doing caregiver without the benefits of being employed as a caregiver and getting benefits. It's a proud profession, and my Dad had to of the most wonderful caregivers :)

I bet your Dad is becoming exhausted. Please note that between 30%-40% of caregivers die leaving behind the love one they were taking care. That is how physically and emotionally exhausting it can be. You are still young enough, but I bet Dad is a senior citizen or close to being one. When we get that age, we have half the energy that we use to have.

KayKay13 Mar 2017
cmagnum the only POA is her son who lives in California. He hasn't even seen her in almost 2 years, but my Grandma is now at that stage where she can't comprehend the situation enough to sign off of either my father or myself for POA.

It may get to the point where we will need a N.H, but my family (mainly mother side) has an unwritten rule about taking care of our own at home. It's been like that since My great great grandma. That's what I was taught, so even if I did, I wouldn't feel right. She doesn't have long left, (most likely less than a year), and I'll be stubborn and do what I can to take care of her at home.

notrydoyoda Mar 2017
It sounds like your grandmother would qualify for medicaid. At some point, she is going to need more care than one person can do 24/7. My dad has Alzheimer's and no longer knows who I am or anyone is. He is blessed to be able to still be at home with three caregivers in 8 hour shifts per day. His care needs are far above what one person could do.

Who has or does anyone have Durable and Medical POA for your grandmother? Whoever does needs to be finding a nursing home that takes people who are applying for medicaid. They may even be able to help you with the application. Where does her doctor say she needs to be living in light of where her health is?

I'm sorry that you have had to be a little adult since age 6 in being a caregiver ever since that young age. That is very good of you, but also sad.

KayKay13 Mar 2017
freqflyer Thank you, and we can't afford any assistant or facilities. We're barely getting by as it is.


cmagnum She has 3 kids. 2 of them live in California, and the other (my father) lives here. He is working to pay the bills, and is also taking care of my mother. I know I might seem young, but caregiving is pretty much all I know how to do. My mother has fibromyalgia and is disabled because of it. I started helping take care of her when I was 6, when I was 8 I helped take care of my other Grandmother who died from brain cancer, at 15 I took care of my Grandfather who died from lung cancer, babysat for around 2 years, and I moved in with my Grandma to be her full time caregiver when I was 17. After moving in, I still help with my mother, but my Dad is her main caregiver now. I also used volunteer, and still do if I can get the day off. I've also have had multiple pets that I rescued or became responsible for. Fish, birds, guinea pigs, dogs, a bunny, hermit crabs, hamsters, a snake, and couple others. I just turned 21 last month, but I can't' lie when I say it's all I know what to do. I'm hoping that after my Grandma passes, I can work in hospice and continue to help others.

notrydoyoda Mar 2017
KayKay13,

21 is far too young to be the primary caregiver. Now is the time to be getting your own life going, college, job, marriage, etc. as well as start building up for your own retirement and old age. Where are he own children and other relatives?

And I agree with the comments above that is a big No that she should not go. It's beyond time for relatives to come and spend a whole week with her, see how she is and see what a burden this is to you.

freqflyer Mar 2017
I know you probably don't want to miss your sister's graduation, so look around to see if any of the Assisted Living facilities in your area have what is called "respite care", meaning they will take care of Grandma for the days you are away. Could Grandma afford this? If yes, maybe Grandma would like staying there, that she wouldn't want to leave :)

Another option is to call a professional caregiving Agency. They could send over 3 shifts per day for those 5 days, but it will be very expensive. Again, it depends if Grandma could afford it. Don't pay out of your own pocket.

KayKay13 Mar 2017
freqflyer I'm her primary caregiver. I live with her and take care of her 24/7. And "show boating" definitely sounds like her. Although even family members who are the most oblivious to how she really is, are starting to notice something is off. Most of our family lives in another state, so they usually only talk on the phone.

freqflyer Mar 2017
KayKay, my answer is no... another no.... and a really big NO.

You have an excellent grasp on Grandmother's condition, more so then many older adult children who are caring for their own parents.

Who takes care of Grandmother on a regular basis? Are you her primary caregiver, helping her 24 hours a day, or does she have caregivers?

Unfortunately some people only see Grandmother once in a great while, and I bet Grandmother is "show boating" when they are there, meaning she is acting quite normal. Many do not see what happens behind the scenes. You know first hand.

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