Dementia caregivers, please fill out this short survey about your needs
My daughter Marissa is completing an MBA degree, of which her capstone project is the last rock to roll up the mountain! She and her group are planning to create an organization to support dementia caregivers. As a first step, they want to gather a sense of the demand for a dementia caregiver support service. To this end, they have put together a short survey to determine what kind of service would be helpful to caretakers.
Marissa’s project is, of course, close my heart. She (and the other members of our family) can clearly see how exhausted Peter gets, even though I am still able to do many everyday tasks by myself. My children and their spouses are a great support to him. Talking to them during my (voluntary) absence, he gets the relief of sharing his difficulties with great listeners and problem solvers, should he need help. I would wish for nothing more than that the kind of help he receives from them and our friends could be available for every single loving and stalwart person who takes on the care of a loved one with dementia. But there may come a time when Peter might want to get support from people outside of our circle so as not to put extra burdens on our kids. The kind of organization that Marissa and her group envisages—which might include personal coaches versed in dementia care and/or in-person or online peer support groups—might be just what he needs when my abilities have shrunk even more.
If you are (or formerly have been) a caretaker for someone with dementia, Marissa and her group could really use your experience and hard-earned wisdom. If you are willing, please fill out the survey. It would also be very helpful if you could write to me in blog comments (below) or by email (firstname.lastname@example.org) about your experience and/or mention the areas of caretaking that gave you the most difficulty. If you belong/ed to a support group or receive/d support from a family member or friend, please let us know what type of support was most helpful. You could also tell us what types of support you wished you had but that was not available. If you just want to tell me your story and not have your information used in Marissa’s project, please just share with me—I would like to learn from you just for myself or just be a pair of ears that will listen to you or a shoulder you can cry on.
December 31, 2021 @ 10:54 am
Hi Gerda, your post resonated with me so much! It’s all about dignity isn’t it? Last summer, my brother died from cancer leaving my 74 year old sister-in-law who was already burdened with full-time care of her 93 year old mom alone. She had also lost her dad six months previously and my brother had only partially succeeded in finalising the estate. It was just too much. My brother like Peter was very tech savvy and he delighted in all that technology could offer in these pandemic times from ordering groceries on line to receiving and paying bills electronically. I stayed with my sister-in-law for a few weeks while my brother was in palliative care and gathered and sorted documents to put all of their affairs in order. It was a monumental task and I was glad to contribute. I wanted to help in any way I could to ease the burden and share the grief. I also learned that it was not my place to do dishes or prepare meals because those were things that my sister-in-law could still do and for me to do these things for her would rob her of some dignity. It was so hard to find the balance! Sometimes I would see a cloth covering the pile of dirty dishes and that was my cue, a signal that she had reached a wall so I could roll up my sleeves and help do the dishes but most of the time I had to hold back. I have since returned home and she still struggles but she is managing and now I am sad that she doesn’t want any more help from me. I have to respect that and let her do things her own way and hopefully reassure her enough that she will call on me if ever she feels the need.
January 2, 2022 @ 9:35 am
Dear Ingrid, thanks so much for your insightful response about your own experience in care-giving. Your helping your sister-in-law by organizing their paperwork is huge! It must have given your sister-in-law a great feeling of being supported and not being alone. You’re right that respecting the person to whom you give help is incredibly important–for me, it’s such a big part of making me feel I am still “somebody” if Peter and my family leave me to do things I feel I can still do. (Sometimes I’m wrong, and then they jump in to help without blaming me…how lucky I am.) YOu’ve put your finger on it that respecting the dignity of the person who needs support is the key to being helpful and not increasing their burden. I am so humbled by hearing your story and newly realizing how many people give up their time and freely give their love in caring for others. Thanks so much for telling me your story! Please let me know how things go as time goes on. I very much appreciate and admire you. xoxox
December 31, 2021 @ 11:24 am
I have an 84 year old mother with Alzheimer’s, multiple strokes and other cardiovascular problems. I’m also raising a grandchild and it became impossible to do both. I was fortunate to find a very good adult family home for Mom and she’s been there about 5 and half years now and does pretty good. She is declining, but it seems medications to slow the process are doing there job. It’s been hard during the pandemic to have time with her like I would like to have and did before. We do talk on the phone frequently. My biggest need has been really wanting to have more support from my sister. Or I should ANY support. She’s seen mom two times in the last 5+ years, rarely calls, and when I update her on Mom’s health issues, etc., I get no real response from her at all. She gives me no emotional support whatsoever. I used to be quite angry about that, but there’s no point in that. I know I’m not alone in this. I honestly don’t understand it.
January 2, 2022 @ 9:51 am
Dear Barb, thanks so much for telling me about your overwhelming caretaker responsibilities! Your experience reminds me how grateful I should be toward the people who help me with everything, from getting places (since I have not been able to drive for 10 years now), staying upbeat during Covid with zoom calls, and Peter–above all–who helps me with something almost every hour of the waking day, often more. It must be so hard to not be able to have enough time with your mother during the pandemic–though I’m happy to hear she is in a good care center and that you can still support her with phone calls. I empathize with you about not getting the help you need from your family. I actually carry guilt myself for not having been present in South Africa to care for mother when she was living with dementia: there was not much I could do from the US, except writing, e-mailing, and calling her as often as I could–and traveling there about every two years when we could afford the plain ticket. Most of the burden fell first on my one sister and then on the other. They, too, felt they were not giving the support of the other siblings even close to the help they needed. I am very grateful to them both for taking such wonderful care of her until her death. I was able to get a tiny flavor of the vast amount of support they needed when my neighbor’s husband had dementia after a severe stroke. She was his only family caretaker, herself old and frail and had to stop her job of cleaning houses (at 75) when he became unable to be left alone–he was always escaping and we had to drive around the streets to find him. Later on he had ugly fights with her and Peter and I tried to help by taking him away to show him something he might be interested in, and so on. This little bit of caretaking was by no means full-time–I cannot even imagine what it must have been like for you to take care of your mother AND raise a grandchild at the same time. Glad to hear you have found a good solution in a good care home. Please stay in touch and let me know how things go. I admire you and you inspire me–I wish you abundant blessings for this new year. xoxox
January 1, 2022 @ 12:24 pm
Gerda, I Haven’t been a care-giver in this scenario but I spoke to a woman who did this full time for five years and filled out the survey on behalf of my sister who cared for our mother with dementia through the final years of her life.
January 3, 2022 @ 9:38 am
My dearest Shen, thanks so much for taking the time to help Marissa’s project. So glad you ghosted for your sister who went through it all (with your absolute support!) You have been my support system for my whole life, particularly the last ten years–you could even respond to the survey as yourself! Miss you and will talk to you soon. Love you endlessly.