How to give support to the caregiver

MineAndHisBoth

My mother has been struggling with memory loss and confusion about events for almost 5 years now. As she started seeing specials and going through every test they could think to give her, I started researching everything I could find for an explanation. She is currently undiagnosed and going through a new set of tests as there have been some changes in the last month. That is how I found you all here.

That said, my boyfriend is the primary caregiver for his father who will be getting a formal diagnosis soon (from research my guess is middle stage Alzheimer’s). He is a loving man trying to balance caring for his father, working full time, raising his teenage kid, and dealing with his own health issues. I have so much information to share with him and so much more time than he does to research the questions he has (along with helping with household chores like cooking and cleaning)... as I am currently unemployed due to covid. My struggle is that at times he allows me to help and he tells me all about the information and suggestions he’s getting and at other times my help seems to frustrate him. I know he is a strong man and does not like to have things done for him. But I also know he needs help now. How do I find the balance in helping him without making him feel bad?

aod326

How terribly unlucky that you and your boyfriend both have LO's with dementia. It's wonderful that you're thinking about how best to support your boyfriend with this. My suggestion is to let him know that you've researched/learned about a particular topic and that, when he feels like it, you're happy to share. Then he can be the driver. I don't mean that from the "strong man" point of view, just because everyone takes in information differently. Plus sometimes people don't want to think about the situation - unfortunately you may not always synch up with when you want to talk about it.

My BFF has been amazing throughout this whole journey with DH, who's currently in stage 7. I'm a very practical person and most of the time just "got on with it". I made loads of lists, did lots of research, because that's my personality. But sometimes I'd say something to BFF and didn't want an answer I just wanted a shoulder to lean on. The first incident of incontinence with DH, I didn't really want to hear things like "make sure he doesn't drink in the evenings", or "make sure he starts wearing Depends". I just wanted her to say "that sucks". I'm not saying that to be critical of her - I couldn't possibly have got to where I am without her. Just saying that sometimes just being there is enough. For us, we agreed that on occasions that I really didn't want advice, I'd actually start the conversation off that way! 

star26

Is it possible that sometimes he is feeling so overwhelmed with so many responsibilities that hearing about something new that needs to be done to help his Dad might just put him over the top? That happens to me sometimes. Even though the help is valuable, sometimes hearing the information or suggestions feels like more pressure to me if I'm not in the right frame of mind.

MineAndHisBoth

aod.... Thank you, I do try to let him drive the conversations always. 

Star... yes, I do definitely feel that sometimes he is just completely overwhelmed. I don’t ever push the conversation and I try very hard to wait until he seems to want my opinion or advice. I just sometimes misjudge. 

Thank you both so much for your responses. 

Cynbar

I often think a person's mind is like a circuit breaker ---- when it gets overloaded, it shuts down to protect the system. It sounds like your boyfriend has an awful lot on his plate, he must feel overwhelmed and exhausted a lot of the time. We all have moments when we feel the just one more thing will push us over the edge --- he may be there on a regular basis. My advice is to back off a little, mention some new idea or piece of information in passing but don't push it. Tell him to let you know when/if he wants to get more specific. This way, he can feel he has more control and he can also dive in when he's got the energy to do so.

MineAndHisBoth

Thank you cynbar... that’s a great analogy and I’m going to try to keep that in the front of my mind!

mommyandme (m&m)

Maybe ask him, “How can I help you?” as in right now or today. 

If you found some great info maybe send the link to him and say “I found this interesting, take a look if you wanna”. Then let it go. 

Some days I’m a sponge for info. Some hours I can’t talk about it or think about it another second. Sometimes I just have to get through this moment without breaking down or with breaking down, who knows.  What triggers me and my responses is deep inside my mind. I often don’t even realize what they are. Then I have to deep think, which as I said, sometimes I can’t take anymore deep thinking.  Conundrum extraordinaire! 

However you can help him, the research you are doing is valuable.  He’s fortunate to have a caring girlfriend.

MineAndHisBoth

I just want to say thank you so much for all the insight. I have been working very hard this week to ask him what I can do (cook dinner, vacuum, look up particular behavior or medication, listen, hold his hand...) to help him in the moment and accept whatever his answer is, and he has been more open about his feelings. We had a nice talk in which I explained my intentions are only to help in whatever form he wants it, even if it’s quietly watching tv with him. And he explained how everything is hard for him in the situation. How he loves and appreciates everything I do and how it also makes him sad because he wants to take care of me instead of me taking care of him while he takes care of everyone else. I reminded him of all the ways he does take care of me and I think we are both feeling better about working together to help each other.

Cynbar

So good to hear!