The time has come....

 I am not sure how to start or where to end this. Our journey with my mom has been long. There have been great days and not so great days.  We have laughed our way through it as much as possible, this horrendous hand she has been dealt.  2020 has not been kind to her, to us or to so many others. I don't feel sorry for us but yet of course in moments, I do. I am allowed. I am not sure if it is just the natural progression of the Alzheimer's, the isolation, the lack of human interaction, the stress of knowing yet not knowing my dad was sick or what but 2020 for her has been the downhill slide that we knew was coming but that we were never ever fully prepared for.

The time has come.  We have to move her. I can't even wrap my head around this half the time but yet here I am doing it.  She will move next week,  after the new year has officially been rung in!  She will start 2021 in a "Rest Home" - it's different than assisted living because she is way passed that but not a skilled nursing facility either because she isn't ready for that yet either. I found a place with some AMAZING help. If you ever have to make this decision, please reach out to me - there are people that can help and I will gladly refer you to them. There was no cost it's what they do. I am forever grateful.  I was fortunate as I already knew this person from our community so it made it that much easier for me to open up and talk about our situation but regardless, these are never easy conversations to have. 

We went back and forth with where to put her! I was able to get her approved for MA Health and Medicaid - another process that is beyond hellacious! I couldn't have done it without the help of the finance office at Sturdy Hospital. They were able to help me because my Dad was a patient there / having treatments!! Bristol Elders also- All amazing. They walked me through EVERYTHING - anytime I had a question, they answered. Even my dad's care coordinator was incredibly helpful! No complaints on that end!  I know and have heard horror stories about the application process. Trust me - I lived it before I had help.  I am forever grateful that I knew where to go for it.  Not many are so lucky. Getting old is horrible in and of itself but the disservice and lack of education to our elderly population is just beyond disheartening. I know I have mentioned it in previous blogs but I get angry every time I think about it.  It's gross and our country as a whole should be ashamed and embarrassed at how we treat them! I will hop off my soap box now but trust me - there are resources. If you are in a similar situation, I will help you find the help you need! You are not alone but I promise that's how it will feel. I will help you. Someone will help you!! 

So, she was approved for Medicaid! GREAT! Well, is it!?  Assisted living is out of the question and they don't typically take a straight Medicaid patient anyway so what now?  Skilled Nursing (SNF) aka Nursing home!?  She isn't really there yet!! She isn't in a bed drooling on herself. Being straight Medicaid you are limited in choice. There were homes in southern RI - too far. There were homes in Saugus - too far. It had to be within 15-20 mins from either me/Dad (ideally) or from my sister so at least someone was close. Plus there is this thing called COVID so there are beds open because people died but they (many) are in lock-down and you can't move in or out and if you can move in then there is NO WAY you are visiting your loved one until this is over.

Thank God for my guardian angel who helped guide me through this process (remember that company above I mentioned!!). She called me one day and told me all about this "Rest Home" option. It's in Norton - she has placed many people there and thought it would be a great fit for her.  She even went with me for my first visit to help me ask questions, and even through the air hold my hand as she knows how devastatingly hard this is for me. Grateful for her support and knowledge is an understatement. 

We have settled on what we feel is the best place for her. It's a small home -20 residents or so -up to 25 can live there. It's about 15 -20 mins from me so easy enough to visit and when there is no such thing as Covid (pray to God that's soon!!) She can come/go whenever we want so I can still take her out shopping and for lunch! There have been NO COVID Cases at this facility through the entire pandemic and we can see her with some notice provided there is no Covid outbreak. They will get vaccinated soon so there's hope that we can go whenever we want.  There are rules, no touching, masks etc.  How will I go there and not hug my mom who is super affectionate a hello or a goodbye??  We are 9 months into this pandemic and she still tells us we are being ridiculous when we tell her there is a world wide pandemic happening all around her so she needs to wear a mask!

She has seen it. We took her. She had to be evaluated. I wasn't sure how it would go. That day was a blur for me for many reasons but somehow she was smiling and happy. She kept saying how lovely it was. When we asked if she would like to live there, she said "Sure, why not - it's beautiful" This of course made me tear up but I kept on moving forward with the conversations, the questions, the answers. She never asked "what about my husband, will he come too?" "Why would you move me here?" She just agreed and kept smiling, happy as can be in her mind.  I watched as we walked around and my sister walked away from "the group" and into what may be her room and burst out crying. I was numb at this point.  I have to remove myself. It's kind of like having an out of body experience. I told her she can't cry - we have to do this. It's for the best. Dad can't do this anymore, we can't do this anymore. She will be safe. She will be happy. She will have friends. So what if she introduces herself to them every day.  I think that the toughest part is by all accounts she is still young and "spry" if you will and the other residents not-so-much! What we need to remind ourselves of is, although they are in a wheel chair and can't move themselves without help like she can, they may be sharp as a tack but she has the brain of 3 year old! Similar yet different. Just because you look healthy doesn't mean you are.

There have been many tears shed - so many. I can't even think of the nights that I have laid in bed just begging for a simple solution. One that would keep her home. One that would keep her safe.  I'd be lying if I said I hadn't even wished she might just not wake up one day before we move her so we never have to actually go through with it.  You name it, I have felt it all. Like the worst daughter EVER for doing this. Like we've given up on her. Then I have the feeling of knowing this is the best solution. She will be ok. She will be fine. One extreme to the other. It sucks. For anyone that has ever done this before, God bless you.  I so appreciate what you must have gone through and I wouldn't wish it on anyone. 

I took my dad there a few weeks ago as he hadn't been able to go yet. He was too sick and too weak and god forbid, Covid!!  I wasn't risking it.  He is finally feeling more like himself and asked that we please go see it.  Of course they obliged.  He liked it. As much as you can like a place that you are about to put the person you have spent 51 yrs with.  As much as her life will change she is clueless and won't even realize it - his however, well that's another story! All that he has known for 51 yrs will change. His life will never be the same again.  None of ours will. I fought back tears all through Christmas thinking, "this is probably the last one!" She will be allowed to leave, yes BUT will it be safe for her at that point? Are we better off to go visit her on Christmas morning!? UGH!!! I can't even go there right now.

There is so much to do -Doctors appointments, labeling EVERYTHING, packing, making lists, checking them twice, three times - making sure she has everything she could possibly need to make sure that she has all that will make her comfortable. It's like packing a kid for college in some respects - new sheets, new towels, a bed - all ordered and sent directly to the home. She will have her own furniture so it's familiar to her.  We have to move it.  I was labeling her clothes the other day while my son distracted her with Candy Land. I felt like a sneak! Back to that out of body experience. I just kept labeling like I was helping a friend move some lovely old lady! Terrified that at any second she would "catch me" and want to know what I was doing. Alas, that didn't happen. Instead I walked back into the living room where she was happily now playing War with my youngest and she looked up startled and said "OH!! When did you get here??" A while ago mom. I brought him - I was just in the bathroom! And like that she went back to her game! Mission accomplished.

I have run through this in my head a million times. It's not safe for either of them at their place anymore. He is ok to be on his own of course but together it's a disaster. He is still sick. Although feeling better and off the chemo / radiation we don't know if he will need another round.  He may. It's likely if not in March then eventually. His cancer is "treatable" not curable so even if he's off the hook for March the likelihood is high that he will have to fight again. He was so tired and weak this first go round there is not a snowballs chance in Hell he can care for her if he has to go again.  I can't do it. I am still in / out of the office. I have two teenagers that have very busy lives.  There is just no way.  She needs eyes on her 24/7.  Sad but true.  

She has escaped on us twice as I mentioned in the last blog. We can't risk it again. She has looked him dead in the face and asked "Do you know where my husband is?" This has happened many many times now. She goes to bed fully dressed because she needs to be ready when "her dad" picks her up - he will be upset if she is "sleeping with him" She wakes up at all hours to use the bathroom but can't find it - it's literally just outside their bedroom.  She has nearly walked out of the apartment looking for it. There have been countless accidents that he has to clean at all hours - even through the Depends. He can't do it. He just can't.  I don't blame him. I am in good health and it's tough enough for me.

Even if we figured out a way, there is the issue of should he need treatment again, who stays with her while he is going or while we are driving him?.  His first go round nearly broke me.  It wasn't the issue of driving him it was the issue of making sure she was covered with care for every single time he had a treatment, a dr's appointment, an MRI, an outpatient procedure and if you have anyone you know go through cancer treatment, you know how many appointments there are.  Some of which, many of which I needed to be there with him. We have a PCA for her but she may only be on from 4-7 so what do we do from 3:15-4:00 so as to not disrupt her care?  Thank god in some ways for Covid. My kids were home - they could sit with her for 45 mins. My husband's schedule was quieter in the fall so he could drive some days while I sat with her.  It was chaos and that is putting it mildly. Most people would have a heart attack if they saw what my calendar looked like for eight weeks. Color coded for him/ her/ us! 

Still gives me anxiety when I look back at it 2 months later!  At least it was pretty with all those different colors! Let's not forget I was /am still working Full Time and running a side business all while doing all this. I have said it before but thank God for my job being so flexible as to allow me to work from home and take everyone where they needed to be or to work from their place to cover mom so the hubs could take dad!  People asked me constantly throughout this - the treatment for my dad especially knowing I now had two sick parents, "How do you do it? Are you ok?! How can I help!?" I always responded with "I am fine. It is what it is and I just do it because there is no other option" In retrospect I too don't know how we did it. I am not looking for props or kudos because I think anyone given the same hand would handle it the same way. Again - No choice. They are my parents and they cared for me and still do in a different way as I am a big girl now but will always help however they can and in turn I must do the same for them. No question, no choice!

She can't carry on a conversation because she forgets her thought as soon as she starts talking. I've definitely mentioned this before. She can't remember the words anymore. Some days she knows me, others she doesn't.  My boys have grown and changed so much in the last year alone that she has no clue who they are half the time.  She often thinks that she is their aunt or that they are just nice boys that are visiting! When they call her Vovo she says "I'm not your grandmother" Alrighty then. Thank goodness they are now well versed in this and just laugh it off. It's been happening now long enough that they just shrug and keep on engaging with her.  Thankful they are so good natured and loving toward her. So, will she really notice that she isn't with us or him anymore? 

These are the things that run through my brain constantly - How do we do it? Do we just ditch/drop her at the door? Does he come with us? How can he? He leaves, she doesn't? Will she be terrified? Will she mad, upset, feel betrayed?  Will she hate us? Will she remember us?  Will she be even more confused than she is already!? My worst fear is that she will feel alone and afraid but does she even know what that feels like anymore?  No worries, I will feel it for her.  She has to quarantine when she gets there for 10 days. What will that be like? She is now in a new place, alone, possibly afraid and she can't leave her room. It's too much. All too much. We have to get her a Covid test prior to her going so that has just been scheduled and we will move her in hopefully as soon as that comes back.  

We have to move her things prior to her moving so it's going to be interesting.  We have already figured out a narrow window where they will be gone, getting her Covid test that we will sneak in and get everything! He needs to put as much aside as possible clothing wise so I can run in and grab it and go along with one of the bureaus and night stand from their guest room! We have 2-3 hours - that's it! In and out, no one gets hurt! Or do they!?

They will have her room all set up for her.  I just don't know how this will all work. It's a terrifying necessity. Every day that passes we are one day closer to this being over. This 6 month process that has monopolized my life will be all settled and she will be safe.  I have all but gone into lock-down mode for fear of suddenly contracting the virus and giving it to her and then we are put off even longer.  It's tough to ever be ready for something like this.  Who says "I can't wait to put my parents in a home?" None of us I wouldn't imagine.

In reference to the above questions constantly running through my mind, in the days that I have been typing / writing this, the decision has actually been made that I will bring her - Me. By myself. If the hubs is home, he will come too. Let's be honest - I told him he HAS to be home! He of course will willingly oblige. Dad can't be there - too confusing for her as to why he is leaving her there and frankly I am not sure as tough as he is that he would actually be able to do it. He knows it's the right thing to do but to ultimately do it? Not sure how he would / could. My sister - Nope. She can't do it. Remember the crying in the empty room? We can't have that. She is too emotional and that's fine. She takes right after my mom! Apparently I am the cold hearted one. I will do it. I can do it. I am at peace with it in some ways. Maybe because I have been working on it since the beginning. Maybe because I see her so often that I know it's time. Maybe I am heartless. Maybe all of the above!? Regardless it has to happen.  It will suck and I am sure the second I walk out of there I will be a hysterical mess but she will not see one single tear from me. That I can promise. I will smile and I will comfort her and I will quietly walk out of there and cry in my car. That's how it has to be so that is how it will be. 

The one thing I keep reminding myself, over and over and over again is when they went through this with my grandmother, she said "If my turn ever comes DO NOT feel guilty. You can not take care of me, nor would I expect you to.  I don't ever want you to feel the guilt that I do because she made me promise I would never ever do this to her! PLEASE promise me that when the time comes you will put me somewhere nice and you will come visit me. That's all I can ask but please don't feel guilty because I won't know anyway!"  I repeat this over and over again in my head along with, "I am sorry Mom. I am so very very sorry!"