I feel as if I’m suffocating…

Rachelle79

This is my first time writing on any discussion boards. When my dad was first diagnosed with a brain tumour leaving (FTD) in 2018 it left just short term memory loss. Since in he was 59 and still active and working at the time. The main focus was doing all the mri making sure the tumour didn’t come back . We didn’t really focus on the dementia part. Well on thanksgiving it progressed drastically. I’ve been doing it alone 24/7. He can still shower, and dress himself. My main thing is he’s a runner. I mean a runner and speed walker. I’ve done all the door alarms and safety precautions. He’s hallucinating. Never sleeps. So I don’t sleep . I feel like I’m suffocating and I don’t know what to do. I look online and I become overwhelmed. Any suggestions welcome

SusanB-dil

Hi Rachelle - welcome to 'here', but sorry for the reason.

You obviously cannot continue at this pace. Does his doctor know about these behaviors? Even if you don't have HIPAA accesses, you can let his doc know what is happening. There are medications that can dial back some of that agitation.

You could check about adult daycare, too.

You can also call the 24/7 alz line and ask for a care consultant. 1-800-272-3900

Please do call - get more advice on getting some much needed help. I take it there is no other family around to give you the break, even for short periods of time?

Sorry you are dealing with this.

sandwichone123

Someone will need DPOA for him so they can manage his money and take care of his personal business. Someone will also need DPOA for healthcare to provide a basis to make healthcare decisions and also have access to health information.

You cannot give up your life for him. You need to sleep, which may mean he needs to be placed in a memory care or assisted living situation that is dementia informed (locked, with staff trained to work with dementia patients).

Start looking at facilities now, even if you are sure you will never need that. The advantage of doing this is that you will have the security of knowing if an emergency comes up you have options.

Anonymousjpl123

definitely sounds like too much for one person. I’m basically sole caregiver for my mom and once it was at the point yours is I had to place her. I did give her the option of staying at home with a caregiver but that was a hard no from her. Living with me (her first choice) was a no from me because I knew I would drown.

are there any siblings? Other relatives? @sandwichone123 is right about POA and Health Care proxy. This is the time to be sure they are in order. It wasn’t as costly as I thought it would be.

Definitely don’t let it go alone. This is not that kind of a thing!

mandajean

Unfortunately, I'm in the same boat. My sister will not assist with my mother at all. We have just started the "escaping". I have purchased cameras, bed alarm, and slide bolts for doors. At night I move furniture in front of the door. Thinking at least this will slow her down, as she does not get around well….except when shes trying to escape!

This is my 2nd go round with ALZ. My Dad also had it and was a runner also! CRAZY!!! I did have a GPS tracker on Dad because he would go out a window and get out. The police had to search for him more than once and I thank God for that tracker! His Dr did give us medication to MAKE him sleep. But the further the disease progressed the medicine stopped working and the Dr explained it was due to have less brain matter for it to work on.

Exposure to Sunshine does help…..I've heard some people use light therapy.

I wish there was some magic item that worked I honestly do. I know how the suffocating feels I quit my job, and now we are totally dependent on my husband's income. It can be very overwheling and honestly Im not the person to give advise on that as I don't deal well with it sometimes, I feel like my life stopped. I dont leave the house, groceries are delivered. But you are not alone….there are alot of us in the same position I know that doesnt help you in your situation.

_sarah_

I second the DPOA and health care POA. We had to do this because mom would miss paying things (rent especially) and would forget that she talked to providers about issues and then flat out lie to them. I'm in Ohio and was able to get the drafts of the DPOA and health care POA from state websites. Then it was just a matter of mom completing them with my sister and I in the presence of a notary public. All in all, it cost us less than $50 (probably far less, but I can't remember now). Each state probably differs, but this is best because we would have hit soooo many roadblocks without it. Ironically, Ohio Job and Family Services won't accept a POA as authorization to sign on the applicant's behalf (for Medicaid), and instead required a separate form - so beware if you have to go this route and make sure you have all forms ready to go BEFORE submitting, because it will delay things.

Caring Daughter

I have a Ring camera in my dad's room. This tends to help because I will get notification on my phone when there is movement while he gets up from bed. Having a tile/ tracker isn't a bad idea referencing Mandajean's comment about a GPS. Maybe get a tile tracker since it does track long distant (I know so because my sister was able to locate her keychain when I borrowed her car and forgot I still had her keys when I flew to a different state).

I understand how you feel about suffocating. My dad's condition requires constant 24/7 monitoring. I had volunteer to step in and become his main caregiver not realizing how challenging and time consuming it can be. Nor did I realize that being a caregiver can drain my own energy. I never thought I would shop around for MC facilities until my own health started diminishing. Everything I enjoyed doing, I can no longer do since I'm fully occupied as a caregiver.