Getting support from family members

A12270 · September 29

My DH is at the beginning to mid part of his diagnosis. Does anyone have any advice on getting children involved in caretaking and better understanding the disease? I am a stepmother to my DH’s kids and they have not been very engaged. Any suggestions would be helpful.

SDianeL · September 30

Sadly it’s very common that family members don’t help. There are many reasons why. Many are in denial. Some just don’t want to face it. They hate to see their LO that way, etc. They have their own lives. Search the posts for one entitled “The Cavalry Isn’t Coming” which says it all. Reading the book “The 36 Hour Day” is a good start. I bought a copy for my step-daughter. Have them search online for dementia caregiving videos by Teepa Snow and Tam Cummings. Search for the chart that shows the 7 stages of dementia with behaviors. Point out your husband’s behaviors and discuss what stage he is in. I kept a list of my husband’s behaviors and emailed them monthly to my step-daughter and more often as he had new behaviors. I did not let my husband see the list. If you need help from them with caregiving, I saw a suggestion on another forum that said to keep a list in your phone of specific things you need done and ask them to help with that one thing. Once that’s done ask them to do one more thing. Do that each time.

towhee · September 30

Sadly, the amount of help caregivers need and the amount of help children think they should have to give are rarely the same. It is helpful to lower your expectations so you will not be disapointed. As the previous poster said, ask for specific help and also be flexible so they do not feel tied down. This way they will be more likely to help in emergencies. Play to their strengths and capabilities. Maybe you need someone to help with organizational tasks or someone to call and distract your LO occasionally. Anything that you need done on a regular basis that you can afford to hire done, do so. Also, when you talk about your LO to them make sure to tell them of some of the good things, not just what you are struggling with. This advice used to drive me crazy, something else I had to deal with?!, but if you support them they can better support you.

For information look at the Dementia Careblazers youtube channel, and check out the following short article by Jennifer Ghent Fuller. You can read it online or download it.

Understanding the Dementia Experience

H1235 · September 30

You have been given great advice. I will attach the staging tool. I agree with giving them information and asking for help with specific things, but I also recommend to keep your expectations low. If things go well you can hope/ ask for more help. I guess I’m just suggesting you manage your expectations. Some family members will do nothing to help and the effort and disappointment in trying to get them to something/anything is overwhelming. Know when to give up. I spent 2 years trying to get my brothers help. I asked, begged, screamed and hollered, and explained how overwhelmed I was, but nothing worked. I no longer expect his help and I’m much more relaxed. I hope this is not your experience!

DBAT.pdf

Michele P · October 1

You have been given excellent advice here. One thing I learned is that people can’t give you move than they are capable of giving. Your level of expectation might not be even close to what they are capable of doing. Prioritize what you need help with and go to the person who you think is capable of handling that specific task. With luck, you will get help from one person.

harshedbuzz · October 1

@A12270

I am sorry you find yourself in this situation.

The disconnect between a spousal caregiver's need for meaningful assistance and whatever bandwidth adult children have available to deliver is very common. I suspect the gap might be wider in a stepfamily situation for a lot of reasons.

Many adult children are busy. Often dementia hits a parent when their adult child is in a phase of peak responsibilities in terms of building a career, perhaps actively parenting children and maintaining important relationships and has little to offer.

Sometimes there is a reluctance rooted in not feeling an emotional connection to the diminished version of their parent as their real dad. One of my dearest friends who cared for her mom until the very end in her own home, opting to living in a different city than her husband for 2 years, cried on my shoulder that "the woman who lives with me is a nice enough lady, but she's not my mom".

Perhaps they don't see a need. They may feel that if your DH is still eligible for the infusions restricted to early stages and traveling in Europe there is no need at this time.

There are 2 distinct complaints spouses make— the first is that the adult children don't visit and the second is that they don't help. These are 2 very different asks IMO. A visit would benefit the PWD; help benefits the caregiver. On the Caregiving Parent Board it is surprising to me how often it is the children of the stepmother who actually step in to help while the PWD's kids stay away in droves.

I think it's worth having the conversation with them. Be specific about what help looks like to you. Another common scenario is the letdown experienced by a caregiver who moved closer to an adult child "for help" leaving behind friends and community to find out help means a DIL will drop off your groceries and DS will mow the lawn.

HB

Quilting brings calm · October 2

Are his children local or long distance? It’s hard to help if it requires a lot of travel time and a hotel room. If they are local- do they work? Are they married? Do they have children? What’s their situation like?
I had to be the one to assist my mom and step/dad for 5 years. They both needed the help as they were in their 80s. I ended up retiring partially due to them. However if my step-dad had been healthy and actually capable of caring for mom, I wouldn’t have felt the need to help near as much in the beginning.

What was the situation over the years between your spouse and his children? Were they close? My step-dad was never really close with his children They lived within 10 miles of him those last five years. They saw him a few times a couple years into it. There was a big blow up between the son and him and they totally disappeared for the rest of his life.

Also as HB mentioned- they may not realize how much you need help. Your other post mentions he does daily tasks, drives, and you just got back from Greece. Have you explained to them what is happening on a daily basis? Have you asked for specific help from them? Have they seen any behaviors for themselves? Because if he’s show-timing, they may think you don’t need help yet. My parents were living in another state 12 hours away when my mom’s issues started. Phone calls didn’t show me the extent of things until my step-dad started making calls requesting emergency visits from us. These eventually resulted in an emergency move of them back to our state.

persevere · October 2

All's I can say is Ditto on everything said here. My DW has a sister (my sister in law) that lives 4 doors away. We hardly see her. It has been a great source of conflict between us. Even to just stop by so she can see a familiar face. As for the kids, during a tumultuous discussion they said they could not help if we were here at home. So we rented a place right across the street from one and the other was 20 minutes away. Most all of the interactions were at my initiation. And it is exhausting because no one comes to see us there, we have to load up and go see them. Given all this feedback you may want to try the following: try sending them all a note telling them about all these stories your getting. Tell them you hope your situation will be different and just leave it at that. You can suggest they go to this website so they get a feel for what we go through. But chances are they won't. And you can get them all the 36 hour day like I did. But they won't read it. You will learn more about yourself and all those around you on this journey than you ever thought possible.

A12270 · October 3

thank you to all that responded this is really helpful. His kids live nearby and I think I need to do a better job of communicating my needs and my DH needs and lower my expectations. Thank you for all the advice it really helps to know I am not alone on the journey!

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