Getting old...it's a BITCH!

Well, the title says it all but I'm not referring to you or me . Oh no, I'm referring to our parents. Whether they've planned for it or not, or if they were even able to, when our parents get old, it can be an adventure, and NOT in a good way. If you have family close by or even better in the same city, it can make life a lot easier for everyone (as long as they are all willing and able to help). If not, and you happen to be an only child like yours truly and DON'T have any other family to step in and help out, it can be stressful and life changing. If they are in somewhat good health relatively that's great. But what if they aren't in good health? Even worse, are bed ridden? Oh, let's even throw in our AWESOME medical care for seniors that's available? I'm actually being very sarcastic, because, unless their social security is under say $14k per year or are married to someone who is a military vet (or widowed from one), unless they planned for it, they aren't getting much help from the State (at least here in California). If you are one of those thinking, "oh they'll just go into a senior home or an assisted living home so I shouldn't have to worry to much"...THINK AGAIN! Unless they qualify for military assistance or can get Medi-Cal (NOT Medi-care...two very different things), you might NOT have much choice but to move them in with you or you move in with them. If you think I'm crazy then you need to WAKE THE FUCK UP and get real with yourself because you MIGHT NOT have the option...period. That's where I'm at right now. And btw, both of my parents are divorced but thankfully my dad is married (and a vet) and I've got family support for him but I could be finding my self having to help BOTH at some point.

This is very much the situation I'm in with my mother. and to add to this, she isn't a "small" lady by no means. Being bed ridden has really complicated things and changing her can be "interesting" to say the least. Because of her weight, she also has arthritis in both her knees. My situation started back in August 2021. This was a situation where she had a bad reaction to a medication she was taking prior to going in for one of her regular scheduled 6-month procedures. She was having a hard time walking so they (Kaiser) released her to a senior rehab facility because she was having a hard time walking. She was there for about 11 days and was able to walk when released, however, she was starting to show signs of having issues getting up the steps of her friends mobile home she was living in. I encouraged her to get them checked out to see what the issue was at that time so we could start getting her help but she didn't do it right away. She finally did a few months later but then she found herself back into Kaiser ER due again to meds but this time, they released her home TOO EARLY...the same evening she was BACK in ER! This time, there was a rehab center down the street from where she lived so it made it much easier to get things to her as she needed them. The place was nice and she got good care to start off with. Prior to being there, we got the x-ray results from Kaiser showing she had arthritis in her knees so we were waiting to hear from her PCP to see what options we had, which never happened. When she got placed into this new center in December 2021, we got the docs involved there and let them know what was going on. With the help of her Kaiser rep there, we were able to get a doc appointment scheduled to have her knee looked at. Since this was a little over a week time, she was getting rehab help, which is when things started to go bad. She initially showed signs of being able to go up steps but then by the end of the week, she was starting to go backwards. Even though they all knew what the situation was and that we had an appointment to hopefully get her some relief to help with her walking and rehabbing, it was determined by Kaiser (per Kaiser rep) that she had to be released since she wasn't showing signs of improving. Ready for this...??? She COULDN'T WALK! It took everything I had to get her into her car and she couldn't make it up her short stairs so I had to call 911 and have them come out to help get her into her home. At this point, we'd been looking at ramp setups but due to cost we were hoping she'd be able to walk but that wasn't the case. Two days after being released, she had her appointment and was able to get a shot in her knee to help but had to call 911 again to get her in and out (by the way, once at Kaiser, I almost couldn't get her out of her car and into her wheelchair - you think I could get help there? Nope...!!!). The very next day, Kaiser Home Health PT came out to start her rehab but it was determined right there that he couldn't do anything for her and suggested we get her back into Kaiser ER so she can be placed into another rehab center. Ok, it was KAISER that I was told that made the decision to send her home even though the reps there knew she couldn't walk and now we're back to this!

Needless to say, we called 911 and got her back in and about a week later she was placed into another center, and because of the shot she received, within a week she was back home and getting home health services to help get her back walking. She was released and home by end of first week of January 2022 and within a week later, we had a ramp system (about $9,000 later) set up (thanks to my Superbike-coach family helping getting it installed!). Couple months later, she was finally able to walk somewhat, but not drive, so we had to hire a caregiving service to help get her to and from doctor's appointment, which was once/twice a week for infusions she needed. Caregiving services, here's the next hurtle. There are services out there that are $10-$15 per hour and there are those that are $30-$40 per hour. the cheap ones are from sites that you basically get "the person next door". Sure, some might have the experience and be medically qualified but here's the catch many don't realize...you actually become their employer. That's right...do some research and you'll find out for yourself. If you spend roughly $2,000 per year on a service like this, regardless if it is with different helpers, you have to pay taxes on that money plus you need to have workers comp and other insurance AND pay for sick days and vacation days! With the more expensive services, you don't have to worry about all of that plus they are insured so you don't have the worry if they get hurt at your place so no worry about getting sued.

You might now be thinking....how about Medicare? Doesn't that help pay for any of this? In a nut shell...nope. Depending on who you have Medicare through, you might get some help, which my mom did for her rehab but was limited, but you don't get help with any transport services or even caregiving/assisted living help. That is where Medi-Cal comes in but that's even "better". If you've worked hard and made decent money, the amount you get from social security (regular, NOT disable social security) more then likely keeps you from qualifying for Medi-Cal. If you don't own your own home and have to rent, you might actually find yourself, much like my mother, needing to be someone's roommate. When their health gets worse and they need assistance, they're screwed and this is when their family NEEDS to step in. Without Medi-Cal, assisted living facilities aren't cheap...even the "cheap ones". Try this on for size...when I started looking, the cheapest was roughly $2300 per month but that's just the basic fee. There are "care fees" that are added on top of the basic fee. Depending on what care is needed, you could be looking at $7,000-$9,000...!!! Try affording this on social security. However, in July 2022, things changed regarding Medi-Cal as far as getting aide to seniors. They have a "share program" but try and get cost info on this...it's all depending on the person who needs it and even then they might not even qualify for this. What happens is they take down info from your qualification form you send it and they determine what the cost is and what is the seniors part. Depending on the outcome, even this charge can be too much for an elderly person to spend. This is why I say, if you think you can just place your parent into an assisted living facility and not have to really worry about things, you're just fooling yourself. Even if they can get it, it could be months, so you might as well start preparing yourself and the rest of your family for the reality that could be coming and deal with it now. 

Things really turned bad and got real at the end of April 2022 when my mom's driver noticed she wasn't looking good and ended up falling trying to get into her wheelchair. 911 was called because it looked like she was having a stroke but turned out it was due to dehydration and a UTI. She ended up into another rehab facility, same one she was in back in December 2021, but this time her care there wasn't great. When she was releasee in June, she still couldn't walk and hasn't been since (btw, there is a lot more to this but not going into those details). As much as this has been a "nightmare" and stressful situation for me, I got lucky and her roommate helped out. She was released from her job just a few months prior to all of this happening so she was able to help out. When things got bad and my mom was bedridden, she even helped changing her. It took me a LONG TIME before I could even stomach handling this and now I don't really think to much of doin it but boy was THAT hard. If it weren't for her roommate, my mom and I would have really been screwed. With that all said, things went more downhill...more for me then my mom. Just after Thanksgiving, her roommate, my mom, and myself got the flu. It started with her roommate, who just happens to smoke, and she was having a hard time breathing. We all thought this was all due to her smoking so I ended up going to her house to work (I've been WFH since January 2022 full time) and that was when we found out she had the flu and we all got sick. Because of this, and even now, her roommate isn't able to change my mom because of the effort needed so, far now, I've moved in but I still have my own place and soon I will need to decide whether to move in completely and give up my apartment or have my mom move in with me.

You're might be thinking to yourself why didn't I just have her move in with me in the first place? Well, easy...I was hoping and thinking this would all pass and she'd be back walking again but mainly because all of her doctors were in her area and it made it easier on her to stay where she was at so I travel back and forth. In order to move her in with me, I myself would have to move because my 1 bedroom apartment, along with my 90lb dog, would make things extremely cramped if/when she started walking. If she moved out my way, we'd have to go through the whole hassle of getting all her medical needs/doctors transfer to Stockton Kaiser, let alone figure out how I was getting her bed and lift out my way. Unfortunately, this is finally where I'm at and having to decide on. If my current complex has a 2-bedroom then that is certainly an option but now we're dealing with Kaiser Home Health and they have been for several months coming out and at least drawing her blood and giving her the infusions she needs. Changing all this to my area could delay her getting these treatments and might even affect her getting Kaiser Home Health. I've read that not all of Kaiser's coverage is the same in all areas. With that said, I'm finding out that Kaiser doesn't have a "home health service" in Stockton and that they outsource this service and many don't provide infusion services. When we first started using a home health service, this was a service that was outsourced by Kaiser but none of them handled infusions. Later, I found out that Kaiser has a home health service of their own, however, it was like pulling teeth getting it set up at her place. At one point we were told my mom didn't qualify or they don't handle infusions at home and this came from someone "high up". They even said the Kaiser nurse that was helping get this set up, was incorrect in mentioning there was such a service. It wasn't until we pressed the issue, including that same nurse pushing it, we found out Kaiser was able to provide home health service to my mom's home (bathing, PT, OT, and nurse for blood draws and weekly infusions). With that said, I could very well be the one moving out to her place, with all my stuff in storage, until we can find a place for that we can afford and allows both a cat AND large dog. The one good thing during all of this has been that I work from home, and without that I'd really be screwed. 

I'm sure there are those of you out there saying "quit your bitching and deal with it". Until you have it happen to you, you have NO CLUE how this affects someone, especially someone who has no family help at all. Yes, I understand this is very stressful on my mom and her life has changed because of all this, but this affects someone in my position more then you realize. I'm saying all this not to get sympathy, honestly I can give a rats ass what you all feel and think, but to hopefully give you an insight into my current world and what you could be in for if/when your parent(s) get to this point. Don't think this doesn't affect you if you are one of those kids that moved away to start your own life far away from your parents. This affects you, or at least it should, if you have any kind of heart at all. As much as I want my life back, my mother can't afford the care she needs with what she brings home with social security and I can't just "forget" about her so I'm doing all that I can do, within my power and knowledge, to at least try and make her as comfortable as possible through this "getting old is a bitch crap". Whether you like it or not, whether you realize it or not, you might NOT have a choice as to whether or not you'll need to help out your parents and take care of them...it's as simple as that...

*** UPDATE as of 8/21/23 ***

After talking to a couple people at the social security office, I'm being told that people who are of retirement age and fully retired DO NOT qualify for SSDI (Social Security Disability Insurance) or SSI. Also, if you do have SSDI then you are automatically switched to regular social security a year after you are fully retired, AND, because the amount of money you get from SSDI is the same as regular social security (you cannot collect both), this could STILL disqualify someone from getting full Medical benefits....

*** UPDATE as of 10/20/23 ***

Since August, my mom has been in Kaiser ER about every 2 weeks for a major nose bleed and lately things have gotten worse where now this is affecting the ammonia levels in her system, causing them to get high and into a state of confusion then later in a non-responsive state. What is contributing to her nose bleeds is the hole in her septum that was caused by the multiple cauterizations she's had. I did some quick research and it appears there are a couple of Litgation procedures that would help a "normal" person suffering from major nose bleeds, however, her Head & Neck doctor doesn't recommend it because of the blood disorder she has called "HHT".  So my understanding is they feel having to go into ER every 2 weeks for a major nose bleed and causing her system to get hit hard is better then attempting a procedure that could possible help but is dangerous because she could die from the surgery? Sorry, I don't see the difference because at the rate she's going at, going into ER every 2 weeks and now having the additional issues of her ammonia levels getting high and causing her confusion & non-responsive state. So, just as the title of this blog says..."Getting old...it's a BITCH", especially for someone who has the medical issues my mother has and it's something I could be having to deal with myself in the next 10-15 years...HHT is a hereditary disease...

By the way, there non-profit organizations out there that could possibly help with caregiving where you can qualify for a grant. One such organization is called Deloro Car Giving Service (https://www.deloro.org/). Getting qualified is actually pretty easy but it's getting the grant that can take time...I've been waiting since August/September for mine and could be waiting until the end of 2023 and maybe even sometime in 2024. Check with your parent social worker, which is how I found Deloro, or try searching online...Good Luck!