Alzheimer's: strategies to help caregiver cope
February 11, 2013 7:13 AM Subscribe
Dad has Alzheimer's. His wife is his 24/7 caregiver. I'm out of state. How can we help her cope?
My dad has Alzheimer's and it's getting pretty far along. He had a stroke too, so his ability to use words is severely compromised. Eventually he'll need to be in a care facility but right now his wife is his 24/7 caregiver. Physically he's relatively healthy.
I'm seeking advice on how to make this better for her. I live in a different state and can visit only for limited stretches of time. It's getting to where she needs to keep watch on him almost every minute. If she's in a different room, or goes across the street for a few minute, she never knows what might happen. Nothing extreme and he does not wander off... But he will move stuff around the house... Stuff from the fridge in the bathroom, all kinds of things like that.
She gets little or no help from nearby friends and is also reluctant to take on paid help- she feels she just can't trust someone she does not know as a friend to look after him while she goes out.
They live in a small, rural town. She, understandably, feels very isolated. I realize there may not be good answers to this, but how have those in similar situations coped?
My dad has Alzheimer's and it's getting pretty far along. He had a stroke too, so his ability to use words is severely compromised. Eventually he'll need to be in a care facility but right now his wife is his 24/7 caregiver. Physically he's relatively healthy.
I'm seeking advice on how to make this better for her. I live in a different state and can visit only for limited stretches of time. It's getting to where she needs to keep watch on him almost every minute. If she's in a different room, or goes across the street for a few minute, she never knows what might happen. Nothing extreme and he does not wander off... But he will move stuff around the house... Stuff from the fridge in the bathroom, all kinds of things like that.
She gets little or no help from nearby friends and is also reluctant to take on paid help- she feels she just can't trust someone she does not know as a friend to look after him while she goes out.
They live in a small, rural town. She, understandably, feels very isolated. I realize there may not be good answers to this, but how have those in similar situations coped?
Adult Day Care. If it is an option for your area.
When my aunt was finally able to convince her mother to put her father in Adult Day Care at least once or twice a week, her mother's quality of life improved and so did her mother's ability to care for her father.
If you can get her to understand that paid help might be BETTER than friends and contribute some money for it, it will really make a huge difference in her life.
posted by zizzle at 7:27 AM on February 11, 2013 [3 favorites]
When my aunt was finally able to convince her mother to put her father in Adult Day Care at least once or twice a week, her mother's quality of life improved and so did her mother's ability to care for her father.
If you can get her to understand that paid help might be BETTER than friends and contribute some money for it, it will really make a huge difference in her life.
posted by zizzle at 7:27 AM on February 11, 2013 [3 favorites]
With Alzheimer's, they may be eligible for a Home Attendant, possibly even a live-in 24-hr one (although there's a lot of hoops to jump through for that.) It should be completely covered by Medicaid/Medicare.
posted by griphus at 7:28 AM on February 11, 2013
posted by griphus at 7:28 AM on February 11, 2013
Contact the Alzheimer's Association, either near you or near her. They have lots of resources and information. A colleague's wife works for our local chapter and they are amazing - they do this every day and know exactly how to help people navigate the system to get the support and help they need.
posted by dpx.mfx at 7:54 AM on February 11, 2013
posted by dpx.mfx at 7:54 AM on February 11, 2013
I'm so sorry about your dad.
When my father had Alzheimer's, he did eventually go to an adult day care, and I wish he had gone earlier.
Organizations that might be able to help are the Alzheimer's Association, hospice, a local council on aging. If your dad is a veteran, there is a program that helps pay for home care, but my experience is that it is very backed up, and takes a long time to get help from it.
More details here:
Care for Veterans with Alzheimer's or dementia is provided through out the full range of VA health care services. Depending on the Veteran's needs, services may include home based primary care, homemaker and home health aide, respite, adult day health care, outpatient clinic, inpatient hospital, nursing home, or hospice care. Caregiver support is an essential part of all of these services.
My parents lived in western North Carolina, and the local hospice was amazing. They help people out as soon as they had a diagnosis of Alzheimer's, and sent a nurse a couple mornings a week to give my mom a break. They also sat down with my mom and found out how she was doing, which was so amazing and important. Later, they helped us find a nursing facility and kept sending a nurse to help out even when he was there.
Good for you for seeking help for your mom; my parents were really resistant to asking for and taking any, but when they did, my mom was able to spend time with my dad that was meaningful and loving and not as stressful.
posted by katinka-katinka at 8:03 AM on February 11, 2013
When my father had Alzheimer's, he did eventually go to an adult day care, and I wish he had gone earlier.
Organizations that might be able to help are the Alzheimer's Association, hospice, a local council on aging. If your dad is a veteran, there is a program that helps pay for home care, but my experience is that it is very backed up, and takes a long time to get help from it.
More details here:
Care for Veterans with Alzheimer's or dementia is provided through out the full range of VA health care services. Depending on the Veteran's needs, services may include home based primary care, homemaker and home health aide, respite, adult day health care, outpatient clinic, inpatient hospital, nursing home, or hospice care. Caregiver support is an essential part of all of these services.
My parents lived in western North Carolina, and the local hospice was amazing. They help people out as soon as they had a diagnosis of Alzheimer's, and sent a nurse a couple mornings a week to give my mom a break. They also sat down with my mom and found out how she was doing, which was so amazing and important. Later, they helped us find a nursing facility and kept sending a nurse to help out even when he was there.
Good for you for seeking help for your mom; my parents were really resistant to asking for and taking any, but when they did, my mom was able to spend time with my dad that was meaningful and loving and not as stressful.
posted by katinka-katinka at 8:03 AM on February 11, 2013
Also, you may want to check out The 36 Hour Day. Incredibly helpful and really a must read for anyone dealing with dementia.
posted by Sophie1 at 8:04 AM on February 11, 2013
posted by Sophie1 at 8:04 AM on February 11, 2013
Another book worth having is Love, Loss and Laughter: Seeing Alzheimer's Differently.
I also found the Alzheimer's Store really helpful; the products they sell gave me ideas for things that would make my mom's life easier, and my dad's time more enjoyable.
posted by katinka-katinka at 8:09 AM on February 11, 2013
I also found the Alzheimer's Store really helpful; the products they sell gave me ideas for things that would make my mom's life easier, and my dad's time more enjoyable.
posted by katinka-katinka at 8:09 AM on February 11, 2013
Give her this number: 800-272-3900
This is the Alzheimer's Association's 24-hour support line. It's a fantastic resource. A caregiver can call it at any time for any reason and will connect straight to a trained counselor. I belong to an Alzheimer's support group and members have called that number for all manner of reasons...from getting specific advice, to simply needing a shoulder to cry on, or to be talked-though a rough episode. It's completely free and it's a vital resource.
posted by Thorzdad at 8:24 AM on February 11, 2013 [4 favorites]
This is the Alzheimer's Association's 24-hour support line. It's a fantastic resource. A caregiver can call it at any time for any reason and will connect straight to a trained counselor. I belong to an Alzheimer's support group and members have called that number for all manner of reasons...from getting specific advice, to simply needing a shoulder to cry on, or to be talked-though a rough episode. It's completely free and it's a vital resource.
posted by Thorzdad at 8:24 AM on February 11, 2013 [4 favorites]
Best answer: Help. Early help. My stepgrandmother had Alzheimer's and she and my grandfather struggled along for years as she progressed from endearingly dotty to confused, scared and unmanageable. In the process, it took a considerable physical toll on him and he died barely a year later. It was a measure of his fortitude that he kept his wits - I was very fond of her but for the last couple of years spending any time with her at all was extremely taxing on one's patience.
They, like many of the elderly, saw asking for help as "not done" and a threat to their independence. They, like many others, developed coping routines. Practical ones (like: she never cooked, meals were at set times), difficult ones (like: shrinking their base of friends to just the closest ones who could cope, and less conversation and more TV watching) and downright dangerous ones (like: he had a bad knee so she would drive and he would direct. On main roads. At 20mph). My grandfather, like many others, saw solutions for dealing with her health issues as disloyalty because he had married her in sickness and in health, and because discussing her with others when she could just about hold a conversation seemed wrong.
But my grandfather craved support. His highlights were the days family came to spend time when he could get some sensible conversation. He loved visiting my family because it let him get some rest. He was an intelligent, humble man who found it hard to ask for help with dealing with someone whose disease progressed over years. Above all, he needed time out, away, and not to feel guilty about it. There are lots of parallels with how parents of young, chronically unwell children feel, I suspect.
With the benefit of hindsight, professional support early would have made a huge difference. Ironically, my grandfather got it when my grandmother died of cancer from dedicated cancer nurses. But part of the battle with Alzheimer's is preparing in advance for the mental death of the person you love and their replacement with a husk of a human being that looks like them.
They went through countless cordless phones, which got put in the washing machine or the deep freeze. Their bathroom was still carpeted even as my stepgrandmother found it hard to use the toilet accurately. So practical advice about Alzheimer's-proofing the home would have helped. But above all, breaking through that barrier of asking for proper, scheduled support was the thing that came too late, even with the family chipping in as much as it could, and even with lots of prompting.
posted by MuffinMan at 8:30 AM on February 11, 2013 [1 favorite]
They, like many of the elderly, saw asking for help as "not done" and a threat to their independence. They, like many others, developed coping routines. Practical ones (like: she never cooked, meals were at set times), difficult ones (like: shrinking their base of friends to just the closest ones who could cope, and less conversation and more TV watching) and downright dangerous ones (like: he had a bad knee so she would drive and he would direct. On main roads. At 20mph). My grandfather, like many others, saw solutions for dealing with her health issues as disloyalty because he had married her in sickness and in health, and because discussing her with others when she could just about hold a conversation seemed wrong.
But my grandfather craved support. His highlights were the days family came to spend time when he could get some sensible conversation. He loved visiting my family because it let him get some rest. He was an intelligent, humble man who found it hard to ask for help with dealing with someone whose disease progressed over years. Above all, he needed time out, away, and not to feel guilty about it. There are lots of parallels with how parents of young, chronically unwell children feel, I suspect.
With the benefit of hindsight, professional support early would have made a huge difference. Ironically, my grandfather got it when my grandmother died of cancer from dedicated cancer nurses. But part of the battle with Alzheimer's is preparing in advance for the mental death of the person you love and their replacement with a husk of a human being that looks like them.
They went through countless cordless phones, which got put in the washing machine or the deep freeze. Their bathroom was still carpeted even as my stepgrandmother found it hard to use the toilet accurately. So practical advice about Alzheimer's-proofing the home would have helped. But above all, breaking through that barrier of asking for proper, scheduled support was the thing that came too late, even with the family chipping in as much as it could, and even with lots of prompting.
posted by MuffinMan at 8:30 AM on February 11, 2013 [1 favorite]
Also, if your dad has some sort of long term care insurance, it might also cover Adult Day Care.
posted by katinka-katinka at 8:33 AM on February 11, 2013
posted by katinka-katinka at 8:33 AM on February 11, 2013
Best answer: Practically, would your stepmother be willing to have someone come in and help out for a while while she remains in the house? Speaking as someone with a small child, just knowing that you can relax and read a book or something or have an uninterrupted phone conversation can be huge.
posted by The Elusive Architeuthis at 11:51 AM on February 11, 2013
posted by The Elusive Architeuthis at 11:51 AM on February 11, 2013
Response by poster: All advice here is excellent. Thank you. You've given me ideas.
Muffinman the situation you describe is much like ours and the advice about not waiting too long is spot on.
Architeuthus, yes that's what is starting to occur to me. She's not comfy leaving him alone with someone and worries about her house - probably unneccessarily - but they've always been very private people.
Thanks again all.
posted by ecorrocio at 4:21 PM on February 11, 2013
Muffinman the situation you describe is much like ours and the advice about not waiting too long is spot on.
Architeuthus, yes that's what is starting to occur to me. She's not comfy leaving him alone with someone and worries about her house - probably unneccessarily - but they've always been very private people.
Thanks again all.
posted by ecorrocio at 4:21 PM on February 11, 2013
This thread is closed to new comments.
Part of me thinks this is a generational thing since my FIL was the same way, even to the point of thinking my ML was not as sick as she truly was. If your father needs to be watched full time, I think he is more then ready for a care facility.
IMO you need to take the reins as she may be too overwhelmed to do anything more. Make an appt. to speak to his drs. or start researching facilities nearby.
Good luck. Alzheimer's is truly one of the most insidious illnesses. My MIL was early onset and was diagnosed at 54. She really was an amazing woman and I feel so sad that she was never able to have a relationship with her grandchildren.
posted by lasamana at 7:20 AM on February 11, 2013