When I found out my mom had vascular dementia/Alzheimer’s disease (UPDATE, she has frontotemporal dementia, but the same rules apply here), I immediately felt incredibly, outrageously overwhelmed. Super. Dementia. Alzheimer’s disease. Now what?
After visiting a lovely place called DENIAL, my good friend David suggested I come up with a “TO DO” list. This was actually one of the best tips I ever got because there’s a lot that has to be done as the disease progresses. Over the course of this blog, I hope to add more “TO DOs” from other young adult caregivers………………. The goal — to help you take care of business and hopefully avoid some stress along the way.
Here are my thoughts (more to come):
- Walk, run, drive, bike to your local Alzheimer’s Association chapter and talk to someone. These people can help guide you along the way, give you names of doctors, nursing facilities, day care programs, home care services, etc.
- Talk to an elder care lawyer or a pal who just graduated from law school about the legal stuff like health care proxies, power of attorney, trusts, etc. There may come a point when you’re going to have to talk to your mother or father’s doctor or make decisions on their behalf — without the right paperwork, your hands may be tied.
- Find a therapist. You have your family and friends, yes. But this is a long journey and it really helps to talk to someone who is not part of your inner circle.
- Get organized. Make lists. Find out where your parent banks, where they shop, who their friends are, what medications they’re on…….. you’re going to want to start getting things in order because eventually, your parent won’t remember those little details, like where that one credit card is or what pills they’re taking.
- Medicare. If you’re parent is on Medicare, have them call up and authorize you to speak on their behalf. This is huge because you will likely have to call them to discuss billing issues, etc, and Medicare will NOT talk to you unless your name appears on their screen as an authorized speaker.
- Join a support group. You may feel terribly alone at times. A support group is a great way to meet other individuals who are also going through this ordeal, and you may get incredibly helpful information about coping, lawyers, dealing with family/friends, etc.
- Circle the wagons. In my opinion, dementia is a disease that affects the entire community. That means, the community should play a supportive role. In my case, that meant going to my mom’s church and getting the support of the priest and other “high-rollers” at the church. This disease is also a family disease…. try to get family members involved if you can — you will need the support.
- If the wagon is broken, keep going. Sometimes, family can’t or won’t help. Try not to let this bother you, it’s really not worth it. Just know that by choosing to wash their hands of this disease, they are no longer part of your equation when it comes to decision-making. If you’re doing the heavy-lifting, you do not need their OK for the choices you have to make on your parent’s behalf.
- Behaviors. If you’re dealing with a parent with behaviors, contact Banner Alzheimer’s Institute in Phoenix, AZ and/or the Association for Frontotemporal Degeneration.
- Count to 10. It’s easy to get angry. Thing is, you may actually need the person who is pissing you off. Stay calm if you’re dealing with someone who can actually make your situation better in the long run. You know, flies, honey……… you get the picture.
- Walk in their shoes. I know it sounds counterintuitive, however, I’ve found that when I enter my mom’s world and speak her language, I get better results. Also, because my mother can’t really communicate, speaking her language helps calm her down………… imagine the comfort you feel when someone FINALLY gets you. You can’t change your parent, so (as long as it’s safe) follow along.
My Demented Mom 
Oh My God. You live my life. Ok, you are living your own hellish version of my hellish life, but still. I think you are the first person I have encountered that actually (almost) lives my life. I’m 24, my very own model of demented mom is 52. (And scarily enough, I’m Kate and my husband is John…) My mom was diagnosed with FTD in 2007 when I was only 21. My parents divorced over a decade ago so my mom was a single mom to me and my two younger sisters when she started showing symptoms. My mom was a pastor to a large congregation and to this day, still loves her communion. I totally understand the poop gag reflex and I don’t remember the last time mom spoke a real sentence to me that wasn’t mostly gibberish. I don’t know about you, but while I appreciate all the support that I can get, I get really sick of people saying “I know exactly how you feel because my mom is dying of dementia too!” The only small difference there is that the people that say that to me are in their late 50’s or 60’s and have had their mother throughout their lives. We don’t, and we won’t, and it sucks. I’m “lucky” because I found a great assisted care facility for her to live in just two miles down the road because I have to work and I can’t be home with her all day. None of my family lives any closer than 5 hours away and my younger sisters have mentally checked out of her care because they “just can’t deal with it.” I bake a lot. It’s a de-stresser for me. I’m so glad that I found your blog today. I’m going to be a frequent visitor now, for sure. Thank you for actually saying the hard things that I feel like I’m not supposed to say.
~Katie
Reading your blog today makes me realize just how lucky I am. I’ve been caring for my Mother (in my home) since last October 2010 after she had a fall, up until then she had been living in her own home, my sister and I taking turns just staying at night (my Father died many years ago). Here’s where the lucky part comes in, she’s over 100, ( will be 101 in September, God willing.) For now her mind is very clear but she can’t walk. She can stand up long enough to get into her wheel chair, that’s how I move her around. I am now confined more or less to just being at home and caring for her which is hard (no shopping trips, going out to lunch etc.) I was so used to going and coming as I wished, but I still say I’m lucky. After reading what you, your Father and (Katie H in your response) must be going through it breaks my heart. Sometimes life seems so cruel and we wonder why. Your life support list has given me many things to think about that I hadn’t thought of so “Thank you” for that.
Bless you for the comfort you’re giving your father, take care of yourself and stay strong.
thanks for your support…
ha. we are in hell together. thank you for reading and for your support. my friend passed along this facebook group… might be worth chking out…
for the kids of parents with ftd and other early onset dementias:
http://www.facebook.com/home.php?sk=group_187971611237497
My mother was also (finally) diagnosed with FTD in early 2011. We knew something was wrong with her since 2007, when she started having panic attacks at work. Currently, she is 57. She will be 58 in 2 weeks.
I have hired a caregiver to look after her during the day but I do wonder how long this situation will sustain itself. The caregiver is in her 70’s and is quite healthy at the moment- but the thing about older folks is that, one day they’re great, the next day they could be dead.
Lately, I’ve been asked by my uncle (my mother’s brother) to host a surprise birthday party for my mother. I had to laugh when he said that- any day I could have a surprise birthday party for my mother and she would never be the wiser. There are these moments where my cruel side really come out. It’s either be cruel or be heartbroken, I guess. Frankly, I had no intention of doing any kind of surprise anything for her birthday; just driving down 120 miles each way to see her and take care of her financial, legal, medical, shopping and dental needs exhausts me. Plus, she lives in a single family home that must be tended to and repaired. I am her only child and most of the care responsibility has fallen on me. Thank God I have a very capable caregiver though.
I sometimes wonder what would happen if I got run over by a bus or just disappeared. Who would deal with this mess? Everyone in my family seems in denial about my mother actually having dementia; they think she is merely depressed. One of my cousins has the idea of taking her on for a week to “cure” her….I simply can’t wait for that!
Anyway, thanks for letting me vent. I do feel for you…..
My acting background helped me when my mother was in the grip of Alzheimer’s. Sometimes Mom talked to the real me, other times I became her high school friend Annie, or other early-life friends or family. At times she cast me in random roles like the kid who mowed the lawn. I never knew who I was going to be that day. Once I got past the bizarre horror of my mother thinking I was someone else, it somehow seemed comforting to play the roles, since it seemed to calm her. Annie was my favorite, since “Annie” seemed to bring out the best in my mother. Evidently they had some very good times together. Not sure how much was real and what was fantasy, and I’ll never know. It doesn’t matter. I always believed that perception is reality, and at that point I had to eat my own dog food.
My mother died five years ago. At the end she had no idea who I was, but she knew we belonged together. If I had written these comments while I was living it, my words would have been very different. Dementia is hell. Find the best ways to make the alternate reality work as best you can.
thanks for your note… i cant even imagine my life without the disease…. without all of this…. i suppose thats why its so dark; i cant fathom my life any other way right now. thank you.
kathy, you should also know that there are alot of resources at the association for frontotemporal degeneration – http://www.theaftd.org – – they focus on all the aspects on this group of terrible diseases, including helping the caregiver – –
Thank you for the suggestion… I have them on my list of resources and follow them on FB, so I can share info they post on their wall. My check list was something I created just based on my own experiences figuring things out along the way.
Oh, how to deal with the grief, the anger, the resentment, the sadness and the pain of seeing the person who reared you and loved you suffer in this way? My Mum has FTD and it’s tearing me apart. How to keep your own life going while doing as much as you can to support them (when you can never do enough). It feels like a massive black hole of need.
Kathy: Just stumbled across your site. So true that we are not alone and definitely important to remember. My mom was diagnosed in 2009 (after years of exhibiting behaviors I thought were just remnants from a terrible divorce) and now is wheel-chair bound and barely audible–living in a nursing home. Some days are ok…yesterday was tough to visit her. Watching her die and the long good-bye are excruciating. I just ssnt some emails to see how to start the process of donating her brain to science–if donating her brain helps us find a cure to this horror…it may have been worth something.
Thanks for sharing your story.
It certainly takes a long time to digest, that’s for sure. I don’t know if you ever get over it. Little by little I suppose. Thank you for your comment.
Thanks for your note. I know how you feel; it’s a tough balance. You want to be there all the time, but you need to take care of yourself too. It’s a struggle and some days are easier than others. Thank you for your comment
Such a great post. Great blog. Thank you.
Thank you so much
Just stumbled on your blog. Wish I’d found it a year ago. My mother was misdiagnosed with AD and moved in with us a year and a half ago. It took ages and lots of suffering on everybody’s part to finally sort out that she has FTD. It’s such a horrible and sneaky disease – by the time you know it’s there, the person you love is gone, and only their shell remains. We’re nearing the end. I am hoping for it to come soon, and dreading its coming. Thanks for writing and sharing.
Thanks for your note. Glad you found me. I know exactly how you feel… it’s awful, yet I am so unsure of how I will feel once she passes. I think a new, terrible pain will reveal itself. I hope not. Anyway, thank you for the note.
Hally, I’ve found any change in routine stinks. The Christmas party at the nursing home sent Mom into agitation. So she turns 90 end of April and my brother told her we were going to have a party and have all the grandkids come. I was sitting there shaking my head no, no, no. He ignored me. I started telling his wife about Christmas. But Mom responds. “I don’t want a party.” He looked hurt and looked at me, and I told him that changes in routine always stirs up things and filled him in on the Christmas party. So now he can come visit on her birthday and maybe bring a cake, but presents get lost and not used, and “strange” visitors she doesn’t remember any more with noise and activity just sets off the agitation. I feel your pain.
I can’t bring myself to write much, because it is simply too difficult, but I just wanted to say thank you for letting me know I am not alone. I’m 25, single, with little family other than my Mom who is pretty far along with FTD. It’s depressing, and often I contemplate suicide. This is truly hell. I just want my mom back.
Please take care of yourself. This is a long and hard journey but it does get easier with time… time will do its thing. I am so sorry.
Hello, Dad has frontal lobe dementia. A very progressive type. Breaking my heart. He is 88. Me 58 (daughter). I am so tired. Just want to stare at the computer screen. Anyway, happy I found your site. Will write more another time.
I am in new Zealand in greymouth small town my mother had FTD for ten years but I think at lest 11 she was bed ridden in the end mute weak because of greymouth hospital being made smaller she had to transfer I put up a fight but they transferred her she passed away a week later some days I think be happy her struggle is over some days I am upset trained health workers said I was wrong in the end I was correct on moveing her
I have done nothing wrong
this is not a nice thing
dementia
I have a mother who has dementia.I went for guardianship.I have taken care of her for three&and a half yrs.by myself after second husband passed away.I have 1 sister only who lives only 2 hr. away,and will not help.When I told her what I was going to do,she said fine “go for it”she did not want any part in this matter.So i go to court&who shows up my sister&her husband.Imagine my surprise when she shows up & lawyer too.and a court appointed lawyer for my mother.Why I have not able to found out who did this.plus my mother had a lawyer & will made out. My sister &her husband took the stand & told many lies about me while my lawyer never did anything to help me.The judge gave my sister guardianship,court appointed attorney made up lies &judge appointed her guardian &attorney will stay as her attorney till she dies.Judge ordered her house sold & her entire belongings sold in a 2 hr auction &she received $277.00 for 2 story house,garage,&shed filled &had antiques.My sister never took charge of nothing & her was in charge of everything,Court appointed sad if I showed up I would be arrested &I had to turn keys ,everything over to my brother-in-law,who was in charge of everything.She has been in personal care home for 2yrs.& they do nothing for her.The court attorney said she was 100% incompentent & judge accepted that & now 2yrs later my sister wants her moved to Ohio &put in a instituion where she will stay till she dies.She is 94 & has lived in Wash.Penna her entire life with her attorney still in charge.I have been to court to see why a woman who had a attorney & will have to accept this.I am sick over this &my sister has not told my mother any thing.My mother says she wants to go to her home & sister says Dr. discharges, she can go home.How cruel can you be?No one can help me understand how this can happen.I pray can help no one I have talked too has any answers.My hearts aches for my mother.Sandy
Hi Kathy,
I join the many who have thanked you for your blog and the information and experiences you share – thank you! I found your blog by trying to search Tena Alonzo (which I have from the New Yorker article a few years ago). I’m hoping to find some information that I might pass along to my husband and his family regarding care from my mother in law — and am so grateful to have found your site. My heartfelt well-wishes and admiration for you and your readers who deal with these issues everyday.
My mom was diagnosed in 2010. She was 55. It is a horrible disease!!! She is now in a home and my dad is still very active in her life. He still goes there every day and picks her up for supper. It is getting so much harder to do. She gets very anxious when leaving the home. I haven’t hear her talk in almost 6 months. She does laugh about everything so I am thankful that she seems happy. She was my best friend and I am now so thankful that we were able to spend so much time together over the years. She was my sounding board for everything. I can’t even express how much I miss her. I have moments where I forget that she is dealing with this and then I see her and it all comes flooding back. So many times I have gone to call her and then remembered she is basically gone. It is like watching a death in slow motion. She no longer remembers to go the bathroom or any basic function. Never did I think I would be helping her in the bathroom when I am only 37.
Do any of you worry about getting it too?? I have done some research and there is conflicting information. Has anyone had any genetic testing done to see if its in your future? Would love some feedback if at all possible.
Hi. Just wondering if this blog is still happening? I feel like I in a living hell. ‘My poor Mum was diagnosed with FTD one year ago. 😦