I'm having a hard time.

Vannette

I was searching for support groups because I am having a really hard time and found you all. I am just so sad and grieving for my brother Doug. If I had to guess from the chart posted here that my brother is in about stage 5. There is me and my two older brothers. None of us had children so it is just us and we have always been close. My oldest brother Doug was diagnosed 6 years ago and has been living with our other brother for the last two years. Neither of them are married either. He also has Parkinson's along with FTD. He has been able to work the remote, use the bathroom and even able to work the Keurig machine and make himself a cup of coffee. Not real well but he could do it up until the last 6 months. Now he really can't do any of those things and my other brother cleans him up after using the bathroom. He hasn't been able to speak words for several years now but my brother that takes care of him always seems to know what he trying to say or want. I live over 3 hours away and always visit once a month because I still work. We have also seen a cognitive decline in the last 6 months. It's like sometimes he just stares at you when talking to him or asking him a question. But 3 weeks ago he fell and broke his hip and now everything is a thousand times worse. I dropped everything and went to be with him cuz I couldn't bare him being all alone at night with no one able to understand what he needs or trying to say. It has brought this disease a reality for him and he is scared and cries a lot. Because he knows this is happening to him and cries and mumbles "what am I gonna do". It's literally breaking my heart! He's in rehab now and they just don't seem to do much and some workers are very kind and speak to him like a human being and others don't even acknowledge him and just change him etc. He has no control over himself and his life and it's only going to get worse and he knows it. I can only be there four days a week and then come home and work a few days then I go back. My other brother can only be there during the day cuz believe it or not is a quadrupledic. A very independent quadrupledic and has done a great job taking care of him. They have always been very close. Sorry this is so long but trying to paint our picture for you. Seeing him go through this is killing me! All I do is cry all the time! My heart feels broken. I can feel it affecting my own health as I can't eat much and so much traveling and not sleeping well ever. My other brother seems to handle it so much better than me. I don't know why this is happening to him and us. We are all we have and lost our mom when we were in our very early 20's. I am turning 60 in two weeks, my other brother just turned 63 and Doug is turning 65 also in two weeks. So he was officially diagnosed at 59 even though he was already having major trouble reading and writing. I feel I am heading into depression if I don't figure out how to manage my grief. I don't ever cry in front of him and I'm always positive and reassuring to him that we are not leaving him there and we have already making plans to bring him home with 24 hour care. That seems to make him feel better for a little while. But then I go outside and ball my eyes out and go back in. I cry myself to sleep every night. Tears run down my face while sitting at my desk at work, while driving and yes while writing this. Anyway thanks for listening to my sad story. I hate to burden others with my issues but found this group and thought maybe talking with people that may be going through the same type thing might help me.

CStrope

Crying a lot seems to be a common thread. I just put in to take the month of March off of work on FMLA. I've never even taken a full week off of work much less a whole month! I am completely and totally emotionally and physically exhausted. I know that during March I will also need to arrange to have Bob placed in a memory care facility. Some days it seems like he could be manageable (meets every criteria in stage 6), but I am still working and don't really have the luxury of quitting at this time. I've been working from home and taking care of him at the same time, but it is affecting my work, my health, and my sanity. I also know that I am not giving Bob the full attention he needs and deserves. I've been telling myself that the care I'm giving him is still better than a facility would do, but I finally have to take my needs into consideration too.

As horrible as this is for your family, I'm so glad you all have each other to lean on. Doug is lucky to have 2 amazing siblings. I agree, seems like whenever they have a bad fall, it intensifies things. I hope he comes through the rehab ok.

Hang in there.....you will have horribly crappy days, but hopefully there are good days too.

GothicGremlin

I'm so sorry @Vannette This is all so hard. Emotionally, it's just gut punch after gut punch.

My sister was also 59 when she was diagnosed with Alzheimer's and FTD. She was probably stage 4 at that time, back in 2018. She's progressed to stage 7 now (the last stage).

You didn't mention this, but have you and your siblings got your legal affairs in order? Like, who has the durable power of attorney (medical and financial) for your brother? Who is looking after his finances? Does he have a will? I'm not trying to be insensitive, it's just as your brother progresses, more decisions will need to be made, and one of you (or a couple of you) will need to be able to make those decisions on his behalf.

I don't know how it is in other states, but in California, where we are, the power of attorney needs to be notarized, and my sister needed to be able to consent. In the later stages, it varies from person to person, but the person with dementia can lose the ability to consent - they lose the ability to reason and know exactly what they are doing and why. This is why it's important to get legal affairs in order asap.

Sending my best thoughts your way.

Jeanne C.

@Vannette hello and welcome to our group. FTD is awful and with the Parkinsonism, it must be truly brutal. I'm sorry for what your family is facing. Please be kind to yourself. You and your family are doing a great job in terrible circumstances.

I echo GG's advice to make sure you see a certified elder law attorney to get your brother's legal house in order. Every state is different, but there may be services like medicaid to help (long-term medicaid is for the sick, not the poor). I was able to get services set up for my husband (65, FTDbv, stage 6) like home health aides, incontinence supplies, even meals. Our CELA was key in getting this done.

And try to find a therapist or doctor to help you. You're important too. And of course, we're here for you.

Vannette

https://alzconnected.org/discussion/comment/199906#Comment_199906

Yes our brother Dale is his legal power of attorney and has been for several years now. He handles all of his things. I can really only make suggestions because, well, I'm the youngest, lol. So older brothers always know better than the little sister. I'm sorry about your sister. Thank you for the advice too.

Vannette

https://alzconnected.org/discussion/comment/199939#Comment_199939

I live in a tiny town with the biggest towns about an hour away so thought I would start with talking to my Dr before driving so far to see a therapist. I have a great relationship with my Dr too. Thank you for taking the time to comment.

Vannette

https://alzconnected.org/discussion/comment/199893#Comment_199893

I'm so sorry about Bob. I'm assuming this is your husband? I totally understand, it's all just so much to handle. It's all so incredibly heartbreaking to watch someone you love go through this and not be able to do anything to fix it. I wish I could take FLMA but I was just off work for 5 weeks Dec/Jan for a surgery of my own and just can't afford to take off again. So I'm just figuring it out week by week. Thank you for sharing with me and I hope you and Bob find some peace through all this unfair nonsense. Thanks again.