[CaptainCrunch]

I've been mulling over posting something for a long time. For the last year or so, the situation with my parents has put me through hell. But I think I'm going to be a little Raw in this thread, because if it helps at all, I'm grateful. Its also a little cathartic for me, its a place that maybe I can dump some of the baggage that I'm dealing with.

Frankly and I'm not a crier. There have been a lot of real breakdowns with myself and my family. There's been a lot of anger and broken relationships within the family as well.

Anyways, my mom had a bad fall about 10 years ago, and suffered a bit of impairment. She basically became a little less then she was, but was still functional. Over the last lets say 5 or 6 years, Dementia has taken a solid hold of her. Its insidious, it does start slowly and sometimes the signs are unrecognizable. The person becomes forgetful, loses interest in things that they liked doing (reading, cooking, going outside). Weird things like food preferences change. My mom went from loving chicken and seafood to hating it. Suddenly one day your looking at everything as it accumulates and you might not realize how far things have gone. My mom's personality changed completely. She started being really restless and moody and prone to outbursts and acting out. She started talking in nonsense, nothing made sense. She started talking about her kids by their names and acting like they were strangers.

Meanwhile on the caregiver side which was my dad, they go through emotional changes as well. They suffer a lot of trauma and their personality changes to. They get frustrated with the changes in their significant other. They are prone to dismissing discussions around help because they come from a generation where issues are an in house problems. With my Dad it became a lot of denial and indecision. For example we talked to them about putting them into long term care together, and my dad would agree, and then get pressured by my mom and then pull back and believe that he could handle it.

The biggest thing to watch for beyond behaviors is things like extreme fatigue, quick weight loss as nether of them ate. The care giver bringing up things like not being able to control behaviors, or off hand remarks about his wife acting out in some kind of violent way.

You have to understand, and this is where a lot of fractures happened. Is that the care giver believes he's doing the right thing and everything and won't welcome external help. He's got it, or she's got it. But since us as kids weren't there 24 hours a day you miss a lot of things that are going on that are creating trauma.

Also for the elderly there is an outright fear thing that has to be addressed with a loss of control. They're going to take my spouse away . . . . They'll take her from me and she'll forget me. These are all arguments of why they don't accept help. There's also a protection mechanism that if someone comes in and see's what's happening with a professional eye, that the primary care giver will believe that he or she is going to be labeled as a bad person or abusive or whatever.

With our mom it finally got to the point where I went for coffee and my Dad was extremely agitated, he was angry and emotional, he couldn't do it anymore and he basically wanted my mom out.

This is the toughest decision and where mistakes are made. While there are some respite beds in long term care that are there to either give a person a break, or transition them to long term care in a safe environment, they're tough to get into and you might end up waiting. Also it can be expensive to do that.

With my mom because us Kids knew we weren't capable of taking care of someone with extreme dementia, and with my dad unable to do it, we ended up admitting her to emergency and they admitted her to what is basically transitional services.

This is where you can end up getting into long term care discussions.

Obviously there is a public route to long term care, you can be assigned a transition nurse, that can help you navigate the waters. But it can take a bit of time. But the hand off is that its a lot less expensive then Private care.

With Dementia you really need to find a facility that offers memory care, they specialize in dealing with extreme cases and getting your parent into a structured environment with a lot of help on the day to day things that you aren't capable of.

Just to backup, us kids did a lot of research on long term care options both private and public. Make sure you do your research, especially with Covid out. there are lots of private spaces with flashy advertising, so you need to research ownership, lawsuits against the facility, things like how they've dealt with Covid and frankly how many people died. You should do the same with public as well. Look at things like their drug and restraint policies, you have to make sure that your comfortable with how they deal with things.

Personally we went the private route, for the most part my parents saved their money well. I won't go into pricing. But the private route was the quickest route to get my mom out of the hospital and into a good environment. We can look at transitioning to a public facility at a easier less stressful place knowing that my mom is safe and well taken care of and local to my Dad so he can visit.

I want to stop for a second and sing some praise to the healthcare workers. The hospital isn't the best place for someone with Dementia. The wards are crowded. There are lots of people with lot of behavior difficulties in there. Its noisy and chaotic, which is the worst thing for people with Dementia. However the nurses have been very kind to my mom, done their best to keep an eye on her and give her some structure. My mom is a bit better then she was. She smiles and laughs. She's put on some weight. However she still wanders like crazy and gets. I do know that it can be overwhelming for the nurses as 3 of them are taking care of a lot of people.

Anyways, we've worked on the transitions, its important to make sure that you understand the requirements for the long term care and you coordinate with their transition nurses and your family doc for things like capacity tests, the required mental and physical checks, and make sure that you are following up on it as transition can't happen without that, and the system is kind of overwhelmed.

As well make sure that you have everything legally done, with us we took over the role of the primary care givers to make all decisions from my dad, so we had to review all of their power of attorney stuff, and all legal documents that have to do with their decisions and for example finances. Consult with a lawyer if you are freaked out they can help you navigate things.

Anyways, long story short we have my mom transitioning to LTC at the end of the month which is a weight off for now.

Be sure that you are watching their spouse, my Dad basically had his wife of 60 some odd years moved out, and while he can visit in the hospital, remember that he or she has suffered a lot of trauma. They're know alone and because the focus is on his wife there's a feeling of abandonment and probably some other things.

I had some scary moments with my Dad because I was really angry with him over the last few weeks of this thing, and I was the only kid that was talking to him, and I was pretty upset with his reactions and behavior and had suffered some real anxiety issues. First of all for yourself, if you need it there is the non emergency helpline and there are resources that you can go to for help with your trauma.

But my Dad started sending out these crazy emails and not answering his phone and it lead to me calling in wellness checks, as well I found out later that my dad had literally attempted to hurt himself and I didn't know this.

So if you can, make sure that you communicate about what's going on, ensure that former care giver that yes you can visit his or her spouse. But because what they're going through is not unlike the steps of grief management, and if you can do it, spend some time, plan some activities (My dad was losing weight and eating like crap, so I had to teach him to basically grocery shop), randomly call to check in, encourage him or her to call you if they're having negative thoughts.

If there's a relationship barrier, then at the very least, push them to call places like the non emergency help line so they can get in line to talk to a counselor or social worker, or call the Kirby Center etc. Make sure they know that there are resources out there.

At the end of the day I encourage my Dad that he couldn't live alone anymore. I found out that the facility that my mom is in has an Independent living wing, so I got him to take a tour of it, talked to him about the money side, told him that he would be close to mom and told him that there are lots of people there to help him, and lots of people his own age to play with.

So I was so happy that I got him to sign all the paper work and agreements last night with a move in at the end of February.

For me, I've started getting counseling, Ive been dealing with a lot of stuff for a lot of years, including problems with my family relationships that I had buried instead of addressing for a long time. Mainly because I thought I was tough enough to handle it myself.

I wasn't, when your sitting at home by yourself thinking that your better off dead then continuing to go through pain, its time to have an oh wow moment. Find a way in the midst of all of the crap and pain, and anxiety and fear to make sure that your mental state is taken care of.

If anyone has questions, feel free to hit me up I don't mind.
this isn't an end all and be all bible of dealing with Dementia in a family member.

If anyone wants to add in thoughts or tricks, because they're going through this it might help anyone that is going through or is going to go through this really ####ty difficult thing.