New to this support group full time caregiver for my grandfather

MsEB

Hi I'm Ebony I'm 37 and am currently a full time caregiver to my 81 year old grandfather. My grandfather originally lived 10 hours away in SC. Last year I moved my grandfather from South Carolina. Social service got involved and were going to remove him from his home because he is unable to care for himself ex... not taking his medicine, declining health, forgetting to pay bills, getting lost etc. My grandfather has 3 children which none made the initiative to go and check on him. My grandfather raised me so naturally I feel responsible for his well-being. When. I went to get my grandfather he was worst off than we thought. He gave away all of his furniture and don't remember whom he gave it to or if they even paid him for it. Most all the food in his apartment was expired, and his blood pressure was through the roof not to mention his other medical issues, and all his medicine was in one bottle or scattered about around his apartment. Long story short I've rearranged my whole life for him not to mention I have a 14 year old daughter and am finally settled into a 3 bedroom apartment to accommodate us all and it's also handicap accessible. Now I'm in the learning process although I read up on dementia and are given tips by family members who is caring for a loved one with Dementia or has, it's nothing like actually living with them. My grandfather is like a 9-5 job and I feel bad saying this because I know he can't help it! He forgets alot! He doesn't bathe or wash his hands after using the restroom. Sometime he become very stubborn when it comes to taking his meds but lately he has been doing ok or at least I thought so. This morning I saw him put his medicine in his pocket and when I asked him if he took it he said yes even though I was standing right there. I don't know if he's lying or just doesn't realize. He won't eat on his own so I just make the initiative to feed him breakfast lunch and dinner on my own. He can become very argumentative when he feels like he is being treated like a baby he thinks he can live and be alone and also he thinks he can still drive. I've also noticed he talks to himself which doesn't bother me I figure he's trying to remember things. What's most concerning is that he makes himself throw up after some of his meals and I don't over feed him. I feel like I am strong enough to help him but I know it will be rough! I thought I had support from his children not to mention one lives here in the same state and their presence is nonexistent! It seems like his children are only concern when it comes to things that have nothing to do with his well-being. It's sad I feel this way or maybe I just misunderstand them. To my understanding we all were supposed to be in this together but its just be I handle EVERYTHING! I could go on forever but I'm sure you guys get the gist of it. I just need support and suggestions and everything else you can offer because I'm so ignorant to Dementia, it's more than I thought!

mommyandme (m&m)

Hi and welcome although so sorry you find yourself here.  

My first thoughts after reading your post is that we were all ignorant in the beginning. I’m still ignorant on so many things.  The learning curve is a steep one for me.  

I also thought about your comment on his answering affirmatively on his meds yet you knew he didn’t take them.  My LO often answers “yes” even though she doesn’t actually know what I asked.  She wants to comply but doesn’t actually understand.  I must be very concise, with few words, when I ask for information.  Often times I must ask her to look at me otherwise she’s thinking about whatever she’s looking at and cannot hear what I said, even though her hearing is fine.  Tunnel vision is a thing. No more multitasking for her.  My communication with her must be very clear. She was stubborn about her opinions and I know that is still present.  If she’s got an idea about whatever it is, she morph things that I say to match her thought although it’s often not at all reality.  So... communication is one of my biggest challenges especially since most of her words are opposite world and match wherever she’s at in her head.  

I also wonder if placing him may be best for him and your whole family.  Not sure, easy for me to say, I haven’t even placed my mother so what do I know.

You will receive more wisdom here soon. Hope you can find some peace today.

Teresag56

Welcome ...I am new to being a caregiver too.  It's a very hard job.my advice to you because you are young and have children and your grandfather may live 15 or more years. I would look into a facility near by you. Where you can still be apart of his life but not responsible for everything. I just took my mom out if assisted living and now I regret I did. I pray you find a solution that works for you

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towhee

Throwing up--Unless he is literally sticking his finger down his throat it is possible that this is not deliberate on his part. It would be best to call and inform his doctor about this as soon as possible. Choking/gagging can look like throwing up. It is also possible he has acid reflux or some other physical issue. Sometimes it is not about how much they eat but how fast, or how big of a bite, or swallowing issues, time of day, lying down or being reclined after eating, and so on. Swallowing problems can lead to aspiration pneumonia, which is a major cause of death for people with dementia. The next time this happens I suggest writing down the details and giving them to his doctor but go ahead and call the doctor now.

Treating like a baby-- Someone has been an adult and in charge of their own lives for 60,70+ years and that is all they remember and now they have someone whose picture in their mind is probably set at age 12 giving them orders or worse, treating them as if they are "stupid". It doesn't set well. It is a challenge for a lot of caregivers. Try "grandpa, you told me to remind you to-  or did the doctor say?, I don't remember, let me look at the doctors written instructions (written doctor instructions can help in the early stages) Learn to fiblet, little white lies.

Reading and reality--yes, you can do all the reading in the world but it just can't fully prepare you for the reality of living with a person with dementia. If you have not watched any Teepa Snow youtube videos, I suggest them, she often role plays different dementia behaviors. 

Help- It will eventually be a 24/7 job. You cannot do it without help, whether it is paid help or family help, and you need to plan and start that help before you are desperate for it. I second that you need to have DPOA and Health Care POA. If your grandfather is past giving them, you will need guardianship. You need to have the ability to schedule help when and where you need it. I highly recommend adult day care at least one day a week.

Family help- A few of us are lucky and have family members that will share caregiving easily as a team. Others, their family members disappear and don't show back up till the funeral. Most of us can get some help if we learn to "manage" our family members and think about what we can ask of different people and how often.  Ask for specific help, at a relatively specific time. Distant family members might do a scheduled phone call once a month, or be available for a distraction in an emergency. Local relatives might stay for a couple hours while you go to the doctor.  Others might not be comfortable staying but would deliver groceries. It is so easy to be angry with relatives because we think they don't do enough, but that response usually backfires.  Better to express gratitude and even small gifts. One of the complaints heard fairly often from family members is "all you talk about is ( person with dementia) and it is always so depressing, you don't care about/have interest in anyone else anymore". Their calls get shorter and less frequent. It is important to share positive stories about the PWD and express interest in other family members and other subjects as well. That's also important for your own mental health.

Being a caregiver doesn't always mean giving hands on care. You are also a caregiver if you are ensuring good care in a facility. It is important to plan for all eventualities.

Wish you well-

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Iris L.

Welcome caregiverjo. This is a three year old thread and MsEB is no longer here. Please feel free to begin your own thread. Read a lot of threads and also read the material in the newcomers group.

Iris