Help me help my mom while she helps my dad!
July 30, 2014 3:45 PM   Subscribe

My dad has Lewy Body Dementia, and my mom is his primary caregiver. He is very disabled at this point, and it's taking a toll on my mom. I need suggestions that I can give her, and internet searches are leaving me overwhelmed!

My 76-year-old father has been unwell for several years. First we thought it was Parkinson's, but a few months ago he had an official diagnosis of Lewy Body Dementia. He is mostly bedridden, although he does gather up strength to move around the house occasionally. He is most definitely a fall-risk, and has had numerous (non-serious) falls. Lewy Body has wreaked havoc with his internal clock, and as such he sleeps for extremely short periods of time and is awake more than he is asleep (so, asleep for 45 minutes, awake for 3 hours). He has visual hallucinations, which sometimes play into his sleep issues. He is fairly demanding and needs a lot of attention. My mom is his primary care-giver, and is not sleeping enough. She is 74, and I know it's just too much. I live a little over an hour away and try to visit at least once a week to help run errands (she can't leave him alone), but I have 3 small children and can't really sit with my dad to allow my mom to sleep for any decent length of time. My brother was staying for a couple of days a week to give her some respite, but he had to cut his days down to about one a week. There is a fellow who comes to give respite for 6 hours every other week, but my mom won't sleep while he's there. My dad was in a rehab facility for a while, but when he tried to become mobile they asked him to leave because of the risk of falling, so my mom brought him home and has tried to make due as she can. I'm super worried for my mom, and wish I could do more! She has no internet access, and is rather closed off to in-home nurses and such, as she feels a bit uncomfortable with strangers in her home. I need ideas for where to start looking for options my mom might be comfortable with. If it's any help, my dad is located in the Eugene, Oregon area. My mom has spoken with a social worker and with some of the people at the hospital, but the impression I get is that it's just too much to figure out right now.

Other things to note: my dad can't take sleep aids due to his disease and other medication interactions. We've checked with his neurologist, and some can worsen the problem or cause more intense hallucinations, so we avoid a lot of medications due to that.

Any suggestions you might have would be so appreciated! I am incredibly new to all of this, and have no idea where to begin.
posted by I_love_the_rain to Health & Fitness (7 answers total) 4 users marked this as a favorite
Some stop-gap solutions for your Mom may be possible, but I think that it's time to talk to your Mom about either getting full-time nursing care at home or finding an assisted living situation that's more suited toward your Dad's needs. It's not realistic for her to be 24/7 care for your Dad at her age, especially with his complex dementia. She has to face the fact that the current set-up is not sustainable. Better to have a solution in place before she's sidelined from being able to care for him and you're all left scrambling for less-than-ideal solutions.

Could you time one of your visits to coincide with either your brother being there or the other helper being there and go with your mother to an appointment with the social worker? You can direct the meeting more effectively and find out more information about the various options you all have.

On a personal note, a close friend of mine who is the sole caretaker of her mother who has severe dementia has spent the better part of this past year trying to coordinate care for her mother. It's been a mix of bad-fit assisted living facilities, hospitals, and rehabs. She finally found a great fit with a home that only has 5 residents and a staff that provides 24/7 coverage and who are very experienced with caring for people with dementia. The care is far more personalized and there's also less chaos overall due to the small size of the group that live there. The atmosphere is far more home-like and her mother is super happy there. Ask the social worker if there are similar options in your area. Your mother can visit him and be there as much as she likes while still having the option of going home to rest and take care of herself and her other responsibilities. It'll be an adjustment no matter what, but she really can't expect to keep doing what she's doing now indefinitely. Good luck.
posted by quince at 4:24 PM on July 30, 2014 [6 favorites]

It would be really great if your mother would allow herself to accept more help. I would treat the current respite fellow as the thin edge of the wedge. He is already coming into the house. Talk to her about the good things about having him there. Talk about what she can do (is willing to do) while he is there to take advantage of the respite. She won't sleep but will she take a shower? run an errand? Encourage her to do more. And, in another direction, ask if she would be willing to have another respite worker for 6 hours on the alternate weeks? It won't be from the same agency but I"m sure you can find someone (i.e.. in-home nurse) who could do it for that same limited amount of time.

You could ask your mother if it was OK for you to talk to the hospital social worker. Maybe you could do the leg work to figure out what other options are available and report back to her.

Finally, If you can find a caregiver support group that might be a big benefit for her - both for the emotional support and also to find out how others cope.
posted by metahawk at 4:25 PM on July 30, 2014 [2 favorites]

Short-term I am most concerned that your mother get some continuous sleep as sleep deprivation has real health consequences, plus it is difficult to make good decisions. If that would help persuade your mother I would couch it to her as "you need help so that you can help dad."

Does your mother not sleep while the aid is there because he is a stranger or is it more because he is male? I know she is resistant to in-home care, but would a woman aid make a difference? Or perhaps someone who is paid, but is at least known in her circle of friends. In these instances church is often mentioned, but I don't know if that is an option for you. At first I would just focus on getting her rest so that you can research other options and take a bit of pressure off of you and your brother.

Long-term I imagine it will have to either be in-home care or a facility that is appropriate, but getting a handle on the short-term issues will help you make good long-term decisions, giving you both the time and energy needed, and an opportunity for your mother to come to accept the new normal, whatever that looks like for you as a family.
posted by dawg-proud at 5:10 PM on July 30, 2014 [1 favorite]

Your mom definitely needs help. What might be most helpful for her, that you and/or your brother can do, is to help her work with social services. She is probably too overwhelmed, and fatigued, to know where to begin. Your dad's PCP can help put her in touch with a social worker at the hospital or doctor's office. Here is a link to senior and disability services in your mom's county.

Link to the Lewy Body Dementia Association which has some helpful information, links to support groups, etc.

Your mom is of a generation where Having Strangers In The House knowing your business is a big deal (judging by my parents' and their friends' attitudes). If she already has a respite care worker, that is a good start. Would she be more comfortable knowing that a particular worker is licensed and bonded?

My dad had Parkinsons' and dementia for the last years of his life. After I couldn't care for him at home, he went to a board and care home which was so much nicer than a conventional nursing home - they had a small group of residents in a converted family home with resident caregivers. The food was delicious, and they had exercise classes and activities for their residents. Dad really thrived there (and gained needed weight - he hated my cooking and loved theirs!). A board and care home might be a good option for your dad.

Good luck! It's tough for your family and especially your mom.
posted by Rosie M. Banks at 5:13 PM on July 30, 2014 [4 favorites]

Could you experiment with different respite care providers? I could imagine that your mother might not be totally comfortable with a man, or a non-family member in the house, or that she might not be able to catch up on sleep during day time hours. Could you look into hiring someone - maybe an extended family member, or the daughter of someone she knows socially.
posted by fermezporte at 6:08 PM on July 30, 2014

I think it would be a huge gift to your family if your Dad was moved to an assisted living facility. He needs skilled nursing care. This is more about convincing your mother that it's time that your Dad was cared for by professionals so that she can keep her health.

If they're still living in their family home, it might be time to make a big change, and it's VERY stressful for people to do this. I'd recommend counseling for your mother to help her come to terms with her new normal. It will eventually be a HUGE relief for her to be able to have her own life again.

Wouldn't it be great if your mom could have her own place, and go to visit your Dad daily?

Here's the kind of place I'm thinking of..

Frankly owning a home is more of a burden at this stage of life, especially when you're providing round the clock care. Once your mom can accept the idea, she will actually be SO much better off!

She may be seeking your permission to do this, because so many folks feel shame that they aren't strong enough to care for someone 'in sickness and in health' but the reality is, it's better for the ailing person to be in a professional environment, than being cared for at home by someone who is herself fraying due to the stress of the situation.
posted by Ruthless Bunny at 4:53 AM on July 31, 2014 [2 favorites]

When my grandmother resisted assisted living and refused any hired help, but could no longer drive or take care of herself a hundred percent, my parents paid a female neighbor/church acquaintance to be her companion. Maybe a similar situation would work for you, a woman other than your mom but not threatening to her, to sit with your dad and keep an eye on things while your mom sleeps or takes care of herself. If it's someone she already knows even a little, the "stranger in my home" fear goes way down. My grandmother fired several home nurses for imaginary stealing before we found the right person.

I really hope something works out for you. I remember how both my parents struggled with confusion and guilt when their parents were suffering from the effects of dementia, and I would wish it on no one. As much as the good wishes of an Internet stranger can count for anything, your family is in my thoughts.
posted by kostia at 10:58 AM on July 31, 2014

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