Concern About a Caregiver

CareFriend

A dear friend who lives many miles away from me is caring for her husband with dementia at home. Both are in their early 80s. I believe she's experiencing serious burnout. I want to help but am not sure what to do. She's not eating well and is losing quite a bit of weight, has been avoiding talking by phone for a month or so, was very emotional when I spoke with her by phone a few days ago, and writes only brief, often unclear emails that reveal that she's feeling angry about her situation. She has little close family nearby. I am very concerned. Any suggestions for what I might do as a friend to help? Thank you!

JDancer

Can you visit? If your friend sounds reluctant, plan (if possible) to stay at a nearby hotel or Airbnb. It's likely your friend can't keep up with housework and the house may not be fit for guests. A visit would give you a better idea about the situation and their needs.

Perhaps you could arrange a meal service, cleaning service or handyman to help.

Continue regular contact and allow your friend to vent.

Tell your friend about this forum.

Thank you for being a friend. Dementia caregivers need as much support as possible.

JDancer

CareFriend

Thank you for your suggestions. I cannot visit anytime soon. Her brother and his wife are visiting her for Thanksgiving and will take food. I do my best to be a good friend, to listen and encourage. She says she doesn't have time to get online, respond to email, etc., very often, so I don't know if the forum would help. In the past, she has taken part in a caregivers' support group online, and she does have very occasional (a few hours a week, if any) help in their home. From what she shares in our phone conversations, I feel I have a pretty good idea of what's going on with her - she's feeling overwhelmed, not eating enough and continuing to lose weight, not exercising, angry that she can't get a break from being a caregiver, is not keeping up as well with bills or getting groceries, etc. I will be talking to her again this weekend and hopefully find out more and be able to suggest something that would help.

ButterflyWings

I am quite a bit younger than your friend, but have a really tough time keeping up with thinking, and doing, everything for two. My DH is late stage Alz and it has been the biggest challenge of my life. I am so blessed not to have depression or some of the other things to contend with, it still is really, really, really hard. Many days have at least a few moments of feeling like we are drowning. And those are among the "good days".

Many of us know it isn't good to neglect ourselves, but time, resources, and energy for self-care? Not easy to come by for those of us in your friend's position. I will say also that my DH is fairly easy (at least once we found the right med combination to smooth out the most dangerous behaviors around mid-stages. Yet it is still such an unbelievable load to bear. It is not possible for many people to do it at home, and definitely not alone. I wonder if her spouse has unmanaged behaviors that may be taking their toll on her causing the weight loss and sounds like depression perhaps. She may be afraid, or even abused, who knows. Or just devastated, at the end of her rope, and ready to give up.

I hate to say this, but especially since they are the same age it is possible that your friend may also be experiencing some cognitive issues herself, in addition to the massive stress and overload (not to mention the terrible grief and pain) of being a 24/7 spouse caregiver.

If possible to encourage her to call the free Alz Assoc hotline, or just log in here anonymously as you suggested to her, and read a few threads, she may find it is a real lifeline. You are such a good friend to reach out and inquire on her behalf. Her struggle is real.

SDianeL

So sad. It must be exhausting mentally & physically for her. See if you can find out her doctor's name and contact them. Look up Area Agency on Aging. She needs a Social Worker to help to see what resources are available for them. Talk to her brother privately.

JDancer

I don't think you would get very far trying to speak to their doctor, but do you know the family members who will be visiting at Thanksgiving? Perhaps a conversation with them would be helpful. Maybe they share your concerns, or maybe they're unaware of the struggle.

I understand your limitations as a long distance friend. Please continue to provide support. So many friends can't understand the dementia experience and tend to step back. Your friend is lucky to have you

CareFriend

Thank you all so much for taking the time to share your thoughts. I am continuing to let my friend know I'm there for her, to the extent I can be so far away. I knew her brother years ago and am trying to reach him through Facebook (I don't have a phone number for him). I believe he does call her pretty regularly, but she's told me she puts on a good face for him, so he may not realize how serious the situation is. I think she is experiencing some cognitive issues, at least from the stress, if not something more (including not eating well at all). She talks of wanting more time for herself but then feels guilty when she does. I've reached out to the Area Agency on Aging in her town, and they have lots of good resources. They told me they can help if I, with her permission, or she reaches out to them; I will suggest that to her but don't want her to feel I'm trespassing. It can be tricky! I know she's doing the very best she can, but it all is taking a toll. Knowing what I know of her experience, my heart goes out to her and all of you who are dealing with something similar. Take good care, as much as you can.

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CareFriend

Victoria2020 - Thank you for your straightforward comments. I'm doing all I can to reach my friend's brother before Thanksgiving. I know he and his wife will not just drop off food but will spend time at her house; I realize they may be more aware of the situation than I know and plan to take action to help her. I feel that my friend is at a point where she can no longer hide in phone calls or short visits that she is in a crisis. Something similar happened to an older friend about six years ago, and I reached out to her family (it took a number of times) until they did what needed to be done to help her. That friend's life improved dramatically for the final six years of her life. Over the past few weeks, my current friend's situation has deteriorated rapidly. The last thing I want is to be only a sounding board or cheer her up for a moment or two and not get my friend some help as soon as I can. (I'm sorry, I'm not familiar with the acronym PWD but know you are referring to my friend.) Thank you again.