Daughter helping care of DW

Lilydaisy

I searched all over for comments about my daughter helping me care for my DW. Most of what I saw were complaints/concerns about lack of help. So is it reasonable for me to think that we can do it? And for how long?

DW was diagnosed MCI in 2016 and AD 2018. Age 73. Behaviors don't perfectly fit a stage, but it is probably 4-5. We want DW to be at home as long as possible and we think we are mentally prepared, though it could be false hope. Time will tell.

Do others have good thoughts or tips from your experience to share to help us do this?

Thanks in advance.

SDianeL

A few things to consider. Is your daughter able to care for her 24/7? Does your daughter have a job? A family? How is your health? While it’s doable it won’t be easy. You should have a plan B. I had planned on keeping my DH home as long as possible and I had the VA to assist me, but I was diagnosed with cancer and had to place him in memory care. Read the book “The 36 Hour Day” which helped me after my husband’s diagnosis. Come here often for info and support.

Joe C.

My stepdaughter help me care for DW while she was home. Since she had her own family and a full time job it was mostly giving me a break on a weekend day but she also stayed with DW so I could take several vacations for up to a week. Getting these breaks was a huge benefit for me. After 4+ years of caring for DW 24/7 I placed DW but having my stepdaughter’s participation help me keep her home as long as I did.

harshedbuzz

@Lilydaisy

Coming in as a daughter, it's hard to say.

Has your daughter offered? Or are you assuming as "the daughter" she'd should or would? Do you have other children?

If she has offered, have you fleshed out what "help" means? Sometimes adult children aren't on the same page as their caregiving parent— you may mean regular respite with daughter handling toileting and hygiene duties and she may think you mean dropping off a few meals, doing your shopping when she does her own or offering you unsolicited advice.

Realistically speaking, assuming she wants to do this, is it something she can do? Is your wife agreeable to care from someone other than you? Dad wanted mom to and only mom to help him. He'd be salty if I brought something he requested if mom was around. Does your daughter have other responsibilities around work or family? Would she need to relocate to help?

HB

eaglemom

I think this situation is totally unique to each family - daughter. I don't have a daughter, so I can't speak of how I'd want her to help with her father. My first question would be how good / close of a relationship does your daughter have with her father? Has your daughter read about ALZ, been to support groups, etc to understand that it will be difficult sometimes? Does she have an understanding that dad's not going to always say and act properly?

You've been given good advice to think over on this subject. I know everyone just wants both you and your daughter prepared. If it works out for you, that's a wonderful thing. However, if it doesn't, I certainly wouldn't want your relationship with your daughter stretched in any way.

eagle

Emily 123

Some very good points here about clear lines of communication & expectations. She might feel a lot of pressure to help you 'make it work'.

You had posted in February about paying her (your daughter), so would definitely consider utilizing a paid caregiver as well to give you both some added flexibility. Define what works for you both and cover the rest with a caregiver.

It wouldn't hurt to look at what's available in your area in case a move to a facility becomes the best option, just to know what's out there. Time becomes a luxury as the disease progresses.

AlzWife2023

It’s doable. Our oldest son has been living with us for almost two years. I could not cope alone. He works from home & I do all the shopping and cooking. We share expenses since I can’t work anymore. I can’t leave DH alone. Even though our son works from home he’s very busy & would not be able to make lunch or provide constant supervision for DH were I to work outside the house. So, I’ve learned that it really takes two caregivers. My son gives me some respite and intelligent adult company. He also does all the heavy chores that my husband used to do. I really could not cope without him. How much longer he’ll want to remain in this arrangement I can’t say. I think he’d leave tomorrow if he thought he could. That’s the tricky part really. How long?

For context, I’d say DH is early stage 6. He’s been wobbly on his feet recently. I have to bathe him. I have to prompt him to eat. He’ll say he’s not hungry when he has not eaten all day. Then I put food in front of him & he devours it. I have to pick appropriate clothes and sometimes help him dress tho he seems very aware that he should be able to dress himself & focuses hard on that. He’d wear the same clothes for months if I did not intervene. He recognizes me and our three adult children. If I counter him he gets very nasty fast! I don’t do that anymore LOL

Lilydaisy

https://alzconnected.org/discussion/comment/230791#Comment_230791

Our daughter is at home full-time, though with a husband and college student daughter. She is already a help. My plan B is home health care, likely increasing time as the disease progresses or it becomes too hard for us. Thanks for your thoughts.

Lilydaisy

Thanks for those thoughts. I expect there will be a limit to what we can do, so when necessary I plan on home health care and then a facility.

Lilydaisy

Those are good questions. She has offered and is prepared to help, though I guess it's time we clarify what that means and her possible available time. I know it will be hard for her to watch. I plan on home health care at some point, likely followed by a facility. I am familiar with facilities in my area, though have not toured them. I think I am several years from that, but I better prepare because things can change rather quickly it seems. Thanks for taking time to respond.

Lilydaisy

I appreciat

https://alzconnected.org/discussion/comment/230815#Comment_230815

e

Those are good questions. She has offered and is prepared to help, though I guess it's time we clarify what that means and her possible available time. I know it will be hard for her to watch. I plan on home health care at some point, likely followed by a facility. I am familiar with facilities in my area, though have not toured them. I think I am several years from that, but I better prepare because things can change rather quickly it seems. Thanks for taking time to respond.

Lilydaisy

https://alzconnected.org/discussion/comment/230925#Comment_230925

Thanks for your thoughts and sharing your positive experience. Our situations have some similarities and I'm glad it has worked for you. It is harder for me to leave her alone for a while. Even though I explain where I am going and write it down for her, I often get a "where are you" phone call. I'm feeling a need to talk this through with my daughter after reading all of these helpful comments.

Lilydaisy

https://alzconnected.org/discussion/comment/230852#Comment_230852

Thanks for your reply and thoughts. I need to talk with my daughter about specifics, time, duties, expectations, and more. I think she feels fully committed but may not have defined that. In Wisconsin I can't find and information comfirming that paying her is an option. She would do it without pay, but I know could use the money. I have some familiarity with facilities in my area but I guess it's time to look more closely. Yes, right now it seems that we have lots of time, but that could change quickly.

AlzWife2023

https://alzconnected.org/discussion/comment/230806#Comment_230806

Hi @Joe C. wondering what made you decide to place DW after 4+ years at home. I’m totally dependent on my adult children’s support. I’m entering year three of caregiving and wondering if I’ll be able to do it indefinitely.

harshedbuzz

https://alzconnected.org/discussion/comment/231009#Comment_231009

Lilydaisy—

I think it's worth an open discussion.

When you say "home health" what do you mean exactly? IME, "home health" is typically post-acute care or medical assistance in treating a chronic condition like CHF or diabetes ordered by a physician for a limited time period. Mom has had "home health" ordered after a few of her hospitalizations for CHF/COPD exacerbations. In reality, this is an RN or a team (RN with OT, PT and/or SLP) who come to the house once or twice a week for a month or two for 30-60 minutes to make sure the patient is transitioning to home. These are medical professionals providing medical services. They do not assist with ADLs beyond a situation where a PT/OT might help a patient regain strength and skills. Normally Medicare will pick up most of this kind of care.

Or are you thinking of in-home aides? These are the people who, for lack of a better term, "babysit" to provide care and companionship so that you can get a break to meet your own care needs and recharge your batteries? These can be hired through an agency or privately and are paid out-of-pocket unless you have a LTC with an in-home benefit.

This is where you might want to crunch some numbers. Depending on the level of care and number of hours you need, these costs can add up quickly. Additionally, it can be a challenge in some places to find reliable quality people to fill the hours you need. No shows and cancellations are common. Residential care is very expensive but depending on the number of hours you need and availability, sometimes a facility can be more cost effective and dependable.

HB

Phoenix1966

What really started to wear my mother and me down when we two were caring for my grandmother(combination of Alzheimer's and vascular dementia) full-time was her increasing sleep fragmentation. Whichever of us was with her(my mother and I would trade off staying with her 24/7) would invariably have to keep the same schedule as my grandmother. As I lived 50 miles away and still worked full-time, I was becoming very tired, my marriage was strained to its limits and my mother was no spring chicken, either.

My grandmother alternated between being pleasantly befuddled and then accusing us of all manner of theft(her extension cords, etc.). Add to that when my grandmother became double incontinent and enjoyed taking off her Depends so she could walk through the fecal material barefoot, she was a handful. The final straw was a night when she had such a terrible sundowning episode and was so certain men were breaking in that we had to call 911 to settle her down. Her heart rate was sky high and we couldn't redirect her. In her own way, she was telling anyone who would listen that she was no longer feeling safe in her home.

That's when I started to look for a MC facility. My mother still wanted to keep her home, but I was the POA. I looked at my mother's worn face and said that dementia was going to take my grandmother, but I wasn't going to let it take her, too.

trottingalong

I helped somewhat with my MIL. My FIL kept her home for those many years. How he did it, I really don’t know. He was 90 when she passed away and she was 88 and bed ridden. There were some rough years with regard to her anger (the disease), but he managed the majority of her care on his own. I came for two hours every day. In those years I worked and had two children and a husband. The last year he had a person come in a couple of hours 3-4 times a week to help him lift her out if the bed into a wheelchair so he could take her for walks and other tasks.

eaglemom

What I'm seeing here is that each situation is totally unique and handled how its best for the LO and caregiver. That's the very definition of ALZ - if you've met one person with ALZ, you've met one person with ALZ. Each person is totally different. Yes, there will be somethings that are similar, but for the most part each person is different. And that is how each caregiver seeks help. Some want to handle it 100% on their own. Some have family members whom step up, hire a service for help part time or full time. Or there is placement, which isn't a bad option at all. It's what is best for your LO and you.

eagle

Joe C.

https://alzconnected.org/discussion/comment/231025#Comment_231025

AlzWife2023,

My decision to place DW was made mostly on safety and caregiver burnout concerns. DW had gone through a period of high anxiety believing people were coming to hurt/kill us and would insist on leaving the house at all hours of the day and night which was completely exhausting. She was also starting to wander and attempting to eat various small objects that she might find around around the house. She needed eyes on her 24/7 at this point. She no longer recognized me as her husband (although she had complete trust in me) or our house as our home. I arrived at the realization that something bad was going to happen either due to DW’s activity or my exhaustion and it was time for placement. It turned out that placement was the best decision for DW, she has been much happier and calmer there than she was at home. She enjoyed having lots of people around, found friends among the other residents, and loved the activities especially when it involved music. When DW was home I could handle all her ADL needs but I could not be an activity director on top of everything else. DW has been in MC for 3 years now and in stage 7 but she is still happy there.

housefinch

I would also consider the potential physical toll. Our PWD is now in MC, but I am in my 50s with a special needs child who now weighs 90 lbs and will only grow. I have to help her in/out of our car, bathe her, help her with toileting, etc, and she is moving in the opposite direction from someone with dementia (she can slowly learn new information). It is physically exhausting. I actually probably have to start weight training and am in physical therapy for multiple body regions (🤣) because of the physical demands of caregiving just for a child. Now add 10-25 years to my age and medical conditions and everyone can probably picture why families ultimately place their loved ones. I say this with kindness and compassion, having had zero clue before our family situation arose. Sending you best wishes.

ALCB

You should make sure she is willing to help, and not feeling pressured into it. Caring for someone with Alzheimer's is a difficult job and not one anyone should be forced to do. Also, I agree with harshedbuzz—make sure she's on the same page as you about what help would mean. If she's unable or not willing to help, then you could consider at-home care. If you need anything else or have any questions, feel free to reach out—this forum has been a lifesaver for me.