Long Term Caregiver Checklist

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Checklist for long term primary caregivers

Becoming a primary caregiver for a person who is handicapped by dementia, stroke or other major illness is a huge responsibility. Having filled that role for the last four years for my wife, who has severe dementia and is in the final stages I've decided to share a list of things to think about as you assume that rule.

This can be a long-term commitment stretching out for years. There is no way to predict when it will end.
It can result in huge time commitments, eventually they will require constant care and monitoring.
There can be considerable financial expenditures both for medical equipment and caregiver assistance.
It may require a great deal of patience on your part because the person you are taking care of will have no patience at all.
There are many daily tasks that will not be obvious in the beginning but will become obvious as the journey continues. These will include and are not limited to such things as dispensing medication, managing medication, toileting and other very personal processes such as showering hair washing and general hygiene.
There are legal considerations. You will need medical power of attorney, perhaps a DNR, general power of attorney, and perhaps eventually a will to determine to how their estate will be apportioned.
When the time comes, as it will for most dementia patients you will need to figure out how to transport them, how to toilet, and how to keep them comfortable when they can no longer move their own body.
You will need to be constantly on the alert for new sores because one of the most serious issues can be pressure sores that result from sitting or lying in the same position for hours at a time. These sores can become life threatening and require wound care specialists to treat them.
At least here in the US at some point you will probably qualify for Hospice. When you do they can be an awesome resource to help you through the final months of the journey. Be aware there are "for profit" and "not-for-profit" Hospice groups. I happen to be using a "not-for-profit" group and they have been absolutely outstanding. I understand that's not always the case with Hospice groups. I can only suggest you use your doctor as a resource to try to find the best group available. Hospice provides all the medicine and all of the incontinence supplies including gloves, bed pads, and underwear.
Your house may need some major changes in order to accommodate wheelchairs and or lifts. This can be as simple as plastic runners or as complicated and expensive as replacing all the carpet in complete rooms.
You will become more intimate with the person you are caring for than you have ever been. Caring for a person in the late stages of dementia is exactly the same as caring for an infant except the person with dementia weighs a whole lot more.
You will need to provide washing, toileting, toothbrushing, hair care, finger and toenail care and all of those other things that we normally take care of for ourselves that they no longer can do.
You also will have to do all of the cooking, all of the laundry, make all of the decisions, that you used to make jointly, by yourself for both of you.
And in the middle of all that most importantly you need to find a way to take care of yourself.
There will be times when you will need help. Help can come from family, close friends, it is available to be purchased at a price from caregiver suppliers, and sometimes you can find people who have the training who will work as private care providers. Since you cannot always know when that need might arise you need to have a plan for backup care.
If you are a sole caregiver, you will feel isolated, you will miss the adult conversation you have been accustomed to in your relationship.
It occurred to me at some point that if I were in an accident or something happened to me, my wife might well lay here for days without anyone knowing she wasn't being taken care of. I found a solution on the web in an app called “Snug”.
At some point with dementia, they will forget most of the years of your relationship. At this point my wife has lost the last 50 or 60 years of her memories and has absolutely no memory of the 19 years we've been married. She sometimes doesn't know who I am and occasionally doesn't even recognize her own children. This can be difficult if you're not prepared for it.
Personally at this point I'm finding it most difficult to watch my wife experiencing intense pain that I can't fix. Learning to manage the drugs that are made available by the Hospice process to minimize her pain is one of my more recent challenges. Watching her suffer while I'm unable to ease that pain is painful for me.
I'm sure there are many more things I could add to this list but these are the ones that come to mind at this moment in time and now that I've opened this topic I hope others we'll feel free to continue their add their experiences.

Stela

dvellio
Everything you wrote was spot on. I hope someone is helping you too

Shagalon

I think you've covered almost everything I could think to include. As a wife caring for her husband, here are some things I didn't expect as my husband started to lose his eye sight and become physically weaker.

Not being able to see and kill spiders
Not begin able to protect our household; I have to figure out how to keep us safe.
Not being able to take out the trash or help carry in the groceries
Not being able to fix the car or drive the car
Not being able to read or figure out how to use the remote control or the stove.
6.Not being able to cut the grass, shovel snow, or supervise contractors that come to the house.
Not being able to use a debit card.
Not being able to argue with the neighbors because their music is too loud.

I've been a family caregiver for almost 30 years...there are so many things I miss.

Carex3

I have been atte ding a zoom class about. Are giver tools and it is primarily about taking care of me so I can take care of others. It has helped me realize that it is OK to request assistance from family, friends, community. Some costs and some does not. It is nice to have to think about myself. 🙂