The Fatigued Caregiver
One of the most frustrating things about caring for an aging parent or other loved one is getting adult brothers and sisters to help. Too often the Fatigued Caregiver needs help but won’t ask for it.
When you’re the sole caregiver for someone, handling the burden alone, it can be overwhelming emotionally.
The reasons for failure by other family members to step-up and help-out are numerous and varied.
I remember my own brother saying he was so glad I had no problem with Mom’s dementia because he just couldn’t handle it. It got on his nerves. He still helped in every way that he could. Yet, he was simply overwhelmed with some issues.
Truthfully, it got on my nerves too but she was my Mother, I loved her, and I’d do anything to help her.
I love my brother, too, and I knew he would do anything to help Mom if she recognized him and asked for help. It’s disheartening, troubling and sad when they don’t recognize you as their child. But it’s sad for them too.
If I had not taken Mom to live with me, my brother would have taken the lead. I have no doubt at all about that. His words were simply his way of saying, “Thank you.” Mom would be better off with me and I already knew that.
Before you grow angry and stressed by the lack of family support, carefully examine the type of support you really need. If you aren’t clear about what you need, your siblings may see your complaints as nothing more than moaning and groaning. Ask for what you really need. Do you need financial support? Do you need respite time for yourself? Or do you need a listening ear when your family member’s behavior gets on your nerves. Ask for what you need, don’t give a long list of complaints that no one could fill.
- If you need financial help, be specific. “Mom’s meds cost $350 week. Medicaid covers $200. I need some financial help with the balance.”
- If you need respite— what kind? “Sometimes I need to share, I need someone to listen while I vent.” “I can’t handle caregiving all day everyday. If someone could take Mom for lunch, dinner, a night at your place instead of mine–I’d be so grateful.”
Once your siblings know what you need, it’s wise to try and understand a few of their fears, or reasons they may avoid your cry for help. It will be helpful if you can bring them together as a group and negotiate, each person giving what they can in the way of finances, respite care, knowledge, etc.
- While one family member may be struggling with finances, they may agree to take the ill person shopping, or for over-night visits; another may agree to pay more than his share financially but be unable to offer respite help.
- A sibling may not accept the diagnosis of dementia, but after hearing some of the stories of strange behavior from other siblings finally accepts the diagnosis. On that note, you should always keep meticulous records from their doctor, proof of diagnosis and medications prescribed. And including all family members in monthly updates is always a good idea.
With a family meeting and group attendance, you are more likely to have positive results. Still, there will always be those who refuse to help or disagree with any strategy planned for the loved one.
In that case, it’s in your best interest to accept their choice and move on. You can literally make yourself sick worrying about someone else’s neglectful attitude but you can’t change it. For your own sanity accept it.
Everyone has a few friends who are closer than family. And with close friends, there are always a few who would gladly help with our burdens whether it be a listening ear or an afternoon off while they spend some time with our loved one.
My Mom had a large immediate family, plus an extra- large second family from her most recent marriage, yet the person I recall most is one sweet sister-in-law. While Mom lived in the “group home,” she would visit regularly and take Mom out for lunch once a week. I’ll always be grateful to her for the pleasure she gave my mom and me.
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Daily Comforts for Caregivers
The Caregivers: A Support Group’s Stories of Slow Loss, Courage, and LoveHope for the Caregiver: Encouraging Words to Strengthen Your SpiritThe Emotional Survival Guide for Caregivers ent
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Great advice on all fronts. Many hands make any task more manageable. However, it is a challenge getting all those “hands on deck.”
One additional way to help caregivers get respite support, is to help the loved one be as self-sufficient as they realistically can. Of course, it all depends on the extent to which Alzheimer’s or dementia has set in. In some cases, much can be done to “systematize” their day and unfortunately, little can be done in some cases.
Checklists, signs and Post-Its can add some structure to their day, but often can only go so far. Some good friends put a few of those tools in place to assist their mother with early-stage Alzheimers and had some early success to provide structured reminders, but it only went so far.
That is where I got involved and helped them formalize their “memory support system.” That has evolved into KalendarKards, a system to help their mother stay in her home safely. We are in the final stages of testing the product and will be releasing it soon.
Thank you for sharing your story and allowing me to share ours.
Best regards,
Dave Wiederrich
http://www.KalendarKards.com
Very interesting information, Dave. I appreciate your sharing it here with us.
I’ll be looking forward to more news on this unique idea.
~Sandy
Thank you, Sandy. Product development is complete and we are now working on packaging. Look for our launch later this summer. You can follow us on Twitter @KalendarKards or sign up for email updates and early adopter discounts at http://www.KalendarKards.com. Thank you!
Except one relative…all my family disappeared when my mom started with dementia. Cousins did not come to see her any more, nieces who used to visit her every week disappeared.Human beings!!!
Agnes, I am so sorry to hear that. Sometimes you have to wonder how much folks really cared in the first place. I know dementia is a scary disease, but it is so sad for those who have it and have to see loving relatives flee.
You are a good daughter Agnes, to stand by your Mom’s side and be with her.
Many blessings,
~Sandy
Thank you for your thoughts, Sandy.
Agnes
Depressing… I thought it was to “help” not advice on bringing in stupid siblings, family who don’t give a hoot about anyone but themselves.
Hello,
I feel for you if you have siblings who won’t help. I understand that it is not an uncommon thing. I was fortunate that both of my brothers helped as much as they could.
If you are in the US, the Alzheimer’s Association has a toll-free phone number: 1.800.272.3900. They can help guide you to many resources that may assist. Several organizations donate time and clothing and “meals on wheels,” is godsend for many.
I hope that you will call their 800# and see if you can get some assitance. Sounds like you could use some respite care for yourself. It is tough job caring for someone with dementia and you need all the help you can get. You might be surprised to learn of many community options that can help.
My thoughts and prayers are with you,
~Sandy
I agree that this is good advice, but people need to know there are agencies like Wesley Homes Home Health (www.wesleyhomes.org) that can also provide help. Whether your family wants live-in care or just a couple of hours so the family caregiver can take a break, home health agencies are an alternative worth looking in to.
Rachel, you are so right. Sometimes the person with Alzheimer’s can no longer remain with family members. Their needs may simply be too great or the caregiver may need to return to employment. I’m glad you suggested Wesley Health Homes. I also have an article that may help you decide if you’re loved one can still live at home. When a loved one with Alzheimer’s needs more care than you can give.
Thank you for visiting and suggesting Wesley Health Homes
~Sandy
Great advice to “always keep meticulous records from their doctor, proof of diagnosis and medications prescribed.” You never know when the current caregiver won’t be able to continue with the care for whatever reasons. Keeping records and having all family members know what is happening now and in the past will make it easier to transition to another caregiver if needed.