Happy 2016 everyone! Sorry I’ve been away for such a long time but life happens and did it ever happen. Health issues for me, a move to a new home and now, sadly, another relative who is having “memory” issues. But I wanted to share this little film with you. What do you think about it?
A lot of what you see now about Hurricane Katrina is a lot of before and after images. While some of them are quite sad – as in areas where homes and lives where swept away and not rebuilt – there are many that show how live and areas were rebuilt and are on the mend if not thriving. When I think back to that time with my father I think about how terrified I was that he probably wasn’t going to recover and that the only surviving parent I had who still knew who I was and could talk to me was going to die. You see, mom, who wouldn’t pass for another five years, had Alzheimer’s but had long ago forgotten who I was as well as lost her ability to speak coherently. For whatever reason, it was important to me and in some ways gave me the strength to carry on being a caregiver to have at least one of them who I could still talk to and relate to as a parent more than as someone I took care of.
I had the option of removing him from life support within a couple of days but I wasn’t ready to do that. That has got to be one of the hardest decisions in the world for anyone to have to make and as I was neither willing nor ready to make it, I asked them what my options were. I was told he could remain on the ventilator for up to 7 days and then he’d have to come off it or they would have to insert it via an incision in his neck. Just make my damn day happy with options why don’t you!!! So I opted to keep him on the ventilator for as long as they’d let me and then I’d decide one way or the other.
Every day I would get up, eat a little bit of something and then head off to the hospital to be with my father in the ICU. After a while I basically tuned out the news of the hurricane and turned it to where it needed to be – with my dad. I spoke to him, I brushed his hair, I prayed, I took notice of all of the machines around him and learned what they were, what they did, and what the various numbers meant. I also had to get in the faces of a couple of staff doctors who, in my opinion, felt that as he was a dying man (me screaming you don’t know that for sure inside) they didn’t need to spend time monitoring him or speaking with me. I still get a satisfying smirk on my face when I think about that one doctor who basically came in the room, barely said hello, read some numbers and then went to another computer to log in some things. I walked right up behind him and stood there until he explained what was going on. I was not going to budge until I got my questions answered.
Sometimes other family members would stop by but they never stayed as long as I did. A friend from church came one time and prayed with me over dad and then asked if I wanted anything from the cafeteria. She brought me back just what I wanted – the red jello with a ton of whipped cream on the top. That was some good jello and I needed it. Eventually they asked if I wanted to see anyone from the hospital’s social service department and I said yes. It was a good thing I did too because that wonderfully kind woman helped steer me out of the fog I was in and helped me to focus on what I needed to do. You see, when you become a caregiver eventually you will have to do the “heavy” legal stuff of power of attorney, health care directives and things like that. They can be depressing to think about and a chore to get depending on if you have ready access to those who can help you create the documents but they are very very important.
But they also have certain limitations and I learned that from the social worker. As caregiver to mom and dad I had duplicate legal papers for both of them with me being the primary responsible party and my sister being secondary if I were unavailable or unable. The power of attorney papers made it where I could sign everything necessary for their care as well as handle their finances. As dad was in a vets home and mom in a nursing home on state assistance I had yearly paper work to fill out for both state and federal assistance; it was a lot of responsibility. I assumed that there wouldn’t be a problem handling things with dad for mom (as in the life insurance policy he held for her and his sparse saving account) once he passed but was I ever wrong! That POA (power of attorney) is only good as long as the person it is for is alive. I was told that whatever I needed to do to make sure mom would still be cared for that was in any way linked to dad, I’d better get it taken care of while he was still alive and quickly!
So for a few days I would come visit my father, tell him don’t go anywhere yet, and then I’d run off to consult with my lawyer about how to handle things. It took me a few days but I got it all done before I had to make the decision of what to do about the ventilator. I didn’t want them cutting him anywhere so I gave in after what felt like being shoved into a corner and let them remove the ventilator. They told me he would probably last around 48 hours tops but they were wrong! He was transferred to a private room where he received only palliative care. The nursing staff on that floor were so kind to me. I was shown where the fridge with the snacks were and where the coffee machine was. I was given a card with the chaplains number on it to call anytime I needed it; for anytime I wasn’t in the chapel itself.
There were no visiting hours set for me; I could come and go as I saw fit. I didn’t turn the television on much in that room and when I did it was to something completely mindless like cartoons or game shows, no more news for me, I had had enough. I would pull a chair up and sit next to his bed and occasionally I would talk to him but by this time it was just sitting there with him to keep him “company”. I still recall how one time I fell asleep with my head resting on his bed next to his hand and I had a dream where he patted me on the head lovingly. I awoke with a start wondering if it had been real or not. I think in a way it was real.
I had stopped whispering in his ear to stay put until I came back and one day I whispered “I’ve gotten everything taken care of. Mom will be alright. You can go whenever you’re ready.” It took a lot to finally say that but it needed to be said. I know he heard me. In my heart I felt that hearing beeps of machines and whatever was on the television was just not a great last sounds to hear so I, or was it my nephew, made a CD of his favorite jazz music. That disc (which is lovingly put away) was loaded with Miles Davis, Coltrane, Dave Brubeck, and more. I had to dig through my memory of what he and mom used to play at home as well as through his LP collection which I now had. A wonderful thing happened which confirmed what I felt about what he could “hear”. His breathing by this time had become a bit labored and raspy the day I slipped the earphones over his ears. When I turned on the music his breathing calmed down and was far less raspy; his whole body seemed to relax. I was so happy that I was able to do something for him again instead of watching him leave.
One day they told me that his death was imminent due to whatever their reading and tests were showing them. I said I was going to stay there until he passed where upon they offered to bring in a bed for me. I had been resting in the hospital equivalent of a recliner chair up until that time and told them I’d let them know if I wanted the bed. I never needed it because that day as I was standing there talking to one of the chaplains as a nurse checked something on him he drew his last breath right before our eyes. It’s hard watching someone die in front of you and even harder when it’s someone you love. It wasn’t scary at all; it was surreal. I didn’t want to leave him. I wanted to stay until the funeral home people came for his body but they gently, but firmly, told me that it would be better if I went home to prepare.
I really really didn’t want to go because I knew the next time I saw him would be at his funeral and that was something I wasn’t looking forward to. It took a team of people that included my son, his father and my nephew to get me, my car, and their cars home. They didn’t want me driving for some reason (sarcasm inserted here). There were no more tears for me until the day of his funeral and not until they played taps…I lost it then! Afterwards when I would go to Jefferson Barracks National Cemetery to visit him, his father and then a year later a nephew, I would bring a pillow and sit on his grave facing the headstone and tell him all about my day, life in general, and of course about mom. I used to be terrified of cemeteries but there it is so peaceful and beautiful.
You are loved and missed, Daddy, but you and mom are together in a much better place and that’s good.
(If you are a caregiver you need to advocate for your loved one and don’t let anyone, no matter what their title may be (doctor, nurse, administrator, etc.), try to make you feel that you don’t know what’s going on or try to pressure you into a procedure or decision that you are not comfortable with. Learn everything you can about your loved ones condition, medications, test results, etc. An educated caregiver is a powerful caregiver. You will need a good legal representative to help you with the paperwork you will need – or at the least explain to you what you will need and how it works. You don’t want to be caught without the necessary tools for helping you take care of your loved ones needs.)
For me and for many who were touched by this horrific event. On August 23, 2005 a storm formed in the Atlantic that would become the costliest and one of the five most deadly hurricanes in the history of the United States. It was a monster! But I was living in the Midwest and far away from this natural disaster. I was dealing with something I knew would come one day but didn’t foresee it coming when it did or how it did.
My father had been living in a Veterans Home for several years and had already lost both of his legs to the ravages of diabetes and his kidneys were failing him. He, being the stubborn man that he was, refused to get dialysis and truth be told it would’ve been a Herculean effort to get him to dialysis anyway. The home didn’t have the facilities for it and it would’ve required him going some miles away to a hospital that would do it, stay there for hours, and then be transported back – yet another thing the home wasn’t capable of doing. I was told that not only would the trip be very hard on him but so would the treatment and that when he would return he would be so spent that it would take him just enough time to recover…to be ready to do it again. I didn’t want to put him through that so I relented and didn’t fight him on his decision.
You see, his home was about an hour and a half drive away from where I lived. The reason he was there is that initially he was in a regular nursing home close by but he and I both hated it and the cost of care for him and mom was awful! I applied for him to be in any Vets home with the idea of just getting him in the system and then transferring him closer when an opening arose. Eventually an opening did come up close by but by that time he had gotten used to where he was (he even had his own private room -score!) so he remained there. He was having bleeding problems and had been going back and forth to the local(ish) hospital and it was wearing us both out! I had the chance to accompany the then husband to a meeting at a resort but I was torn about staying home just in case Dad needed me or to go and give myself a break. I went…and I regretted that decision.
It was at a meet and greet party that I kept stepping out of to call and check on my father when I was told that he was getting worse and what did I want to do. Long story short (and to be honest a lot of my memory of that night is a panicked blur) I said put him in an ambulance and get him to the big hospital near where I lived that had done some surgery on him before and do it now! It involved a lot of phone calling with that hospitals ER department, asking if a certain renal specialist was going to be available, begging with tears in my eyes over the phone for an ambulance service to take him on that hour and a half drive to the hospital…and then me agonizing over if I should leave the event and go be with him. Once he was transferred to the hospital I spoke with the attending who said he was lucid and talking and I could relax. Me? Relax? Hell no! Screw that!
I was in the hallway outside of the party when I just slid down the wall and began to sob; my body just quivering from the weight of it all. Strangers were stopping to try and comfort me fearing someone had hurt me but I was crying so that all I could do was just shake my head. I paced the floors of that resort almost the entire night trying to get a clear mobile phone signal where I could before I finally said we are leaving I have to be with my father! I’m not sure when it happened but somewhere in all of the phone calls his doctor told me that he threw up blood that looked like coffee grounds and that he lost consciousness.
The resort was a 2+ hour drive away from the hospital and there was some speeding done; I am thankful that one state highway patrolman just told us to slow down and didn’t arrest or ticket us. When I rushed into the hospital, my father was in the ICU hooked up to all manner of wires and tubes that beeped and pinged…and a ventilator. I stopped crying and shifted into ferociously protective daughter/caregiver mode. I was told that it didn’t look too good for him and that I probably should let him go. Wrong thing to say to me people! I asked how long could he stay on the ventilator before he had to come off. I had a week; a week to figure out what to do, how to approach it, research options, make plans and backup plans for those plans, spend every day at his side, snarl at some condescending medical folks (don’t ever piss me off when it comes to the care of someone I love) pray and watch the television in his room that was on constant loop of – you got it – the coverage of Hurricane Katrina.
It was like watching the proverbial car wreck. Everyone in the ICU unit had it on and we all just couldn’t quite turn away from it; it was a morbid fascination. I too watched and couldn’t believe what I was seeing on the television as I was trying to hold it together for the man in that hospital bed who I felt I had somehow failed; who I hadn’t spoken to when I could still talk to him because I was so busy trying to figure out what to do for him… and now I could no longer hear his voice. All I could hear was the news report of Katrina and the machines that were keeping him “alive” making their noises. Some days when I would sit there with him and talk to him, stroke his hand or hair or pray that a miracle would happen, I would switch off the television entirely or turn it to another channel. Let me tell you, it was hard to find something else to watch what with it being on every major channel and hospital televisions aren’t known for having a lot of viewing variety.
Even when I would change the channel or turn off the TV, if I left his room to go get something to eat (I didn’t eat much during this period – I had no appetite) or to just go for a walk, when I would return someone would’ve switched it back to the coverage of the hurricane. And what was shown was a nightmare! I had been to New Orleans and here I was sitting with my father who was dying watching the destruction and deaths of others. I recognized areas they were showing, I had eaten at some restaurants that were destroyed, the bottom level of the hotel I stayed in was shown on fire. It was a horrible situation all around…and I watched parts of it in surreal amazement while I was still holding on to my father with the hopes of a child wanting daddy to come back.
My original intent of this blog was to follow the timeline of my life as a caregiver but we know that plan went to hell in a hand basket. But isn’t that just like dementia and Alzheimer’s? You never know what is going to happen from day to day and you just have to deal with it as it comes at you; plans will get screwed up! Today I am dreading next week not because of something that is actually coming up but more so because of an anniversary that is coming that always brings tears to my eyes. It’s been 10 years now but it still gives me a kick in the gut each year. Will share with you next week about this…
But what happened today was that as I was working away at my desk I paused to let my poor tired eyes rest and I turned to look at the cork board I have on the wall next to me which is filled with a potpourri of items – notes, greeting cards, old work ID badges, a movie ticket stub (why is that one there by the way???), a ten dollar bill I found once in a mud puddle and photos. There are photos of the kids, the grandchild, me and the spouse, me and my father and one of mom walking down the hallway with a smile on her face in the locked Alzheimer’s unit of her first nursing home.
I came to really hate that place but that’s another story for another day. What scared me was that with all of those photos up there the ones of mom and dad had the opposite effect on me. I look at the one of me and dad in his wheelchair and I get misty eyed and miss him but the one of mom? I find myself staring at the photo and trying to connect some how and all I feel is this lost and disconnected feeling; almost as if she is a stranger or at best a distant relative. And that is scary! Dad passed away 10 years ago but mom passed 5 years ago. So why do I feel more connected to him than her? That robbing bastard Alzheimer’s!
Up until he took a turn for the worse, I could still talk to my father even if it was in short sentences and he still knew who I was. But I dropped off mom’s radar some 14+ years ago. She was always mom – nothing could ever change that – but the reality was that she was just this little old lady with Alzheimer’s that I was taking care of and took care of for many many years. Somewhere in there that mother daughter relationship took a up in the nosebleed section back seat to the caregiver/dementia patient relationship; that is if you could even call it a relationship because there was no give and take, there were no conversations (she went into word salad mode very early in the disease), and there was no recognition from her side of the fence of anything other than basic feelings and emotions. She smiled at things we couldn’t figure out what the hell she was smiling about. She smiled when you gave her chocolate to eat and she would yell and once in a while curse if you touched or grabbed her the wrong way and let’s not talk about the commotion when it was time to do any lab work. If you didn’t watch out she could punch you pretty good.
But even with all of these memories I still look at her picture or think about her sometimes and feel this lost emptiness, a failure to “feel” her. My mother left me a long time ago and I don’t seem to be able to find her…and that’s scary.
As a caregiver you have to be there for your loved one when they need you or when the people or place that is taking care of them needs you but what if you aren’t available? What if you are sick or out of town or tied up with something else…then what?
That recently happened to a friend of mine who left to go on a much needed vacation. She is the main person responsible for checking in on her mother. Her mother does not have dementia but is up in age and has other medical issues but was pretty independent. To make a long story short, when my friend called her mom upon her return mom didn’t answer her phone and after several tries she finally went over there and had to break in only to find out that she had slipped, fallen and had been on the floor injured and dehydrated for a couple of days.
She is on the mend now but will be in a rehab facility for some time. Something like this is a caregivers nightmare which leads me to the title of this post – do you have a backup plan? Do you have support in being a caregiver so that if you weren’t able to check up on your loved one someone else would? Is there someone else on the list of people to call if there is an emergency at a care facility and are they someone that is on the same page with you in how your loved one is to be cared for?
When I was caring for mom and dad I was the number one contact person for both of them. I never turned off my cell phone; I couldn’t really. And if I was unable to visit them or take care of any issues such as when I had to have surgery, I asked either my then older children to check on them or my sister. Even with that I would call them as soon as possible to get the full report on what occurred during their visit. This often drove them nutty. Too bad.
But when I actually let myself go on vacation, I was still tied to my phone (just in case) even though I had asked my sister/kids to check on mom and dad or I told the staff at their respective homes to call one of them and not me. Even with those arrangements I would still have a certain amount of worry about my parents and if family was really checking up on them; the worry factor would increase if I was out of the country or in an area with poor cell phone coverage. In caregiving no one does it exactly the same. That doesn’t mean they do it worse than you (well sometimes) it just means that what I would be concerned about or would look for wasn’t always the same thing as what my sister and children did.
So do you have a back up plan? If you have other family members that can help you then make sure they know about your loved ones routines, meals, medications, doctors, etc. Have a sheet made out for them with all of the necessary information on it. Leave a key with them so that they can get into the home but not unannounced. Have a scheduled time that they will call your loved one if that is a workable plan and let your back up person/s or the homes know where you will be and how to reach you…but only if it’s an emergency. You need that break!
If you don’t have family to assist you then are there friends, neighbors, church members that you can count on to check on your loved one be they at home or in a home? Perhaps you can see about hiring someone to come in an check on your loved one if you can afford that. Your local Alzheimer’s Association (Heart, Cancer, etc.) has resources to help you with something like this; use their resources because when it comes to being a caregiver having a back up plan is a necessity if you want to avoid something happening to you like what happened to my friend.
My daddy (yes! I will forever call him daddy) passed away in 2005 from renal failure brought on by diabetes. For five or so years before that I was the primary caregiver to him and mom at the same time. For awhile there I tried to manage taking care of them in their home but when that blew up they had to be sent to two different nursing homes because they had different health concerns. Mom had Alzheimer’s and Dad was a diabetic.
The parental holidays of Mother’s and Father’s day were always bittersweet for me because they were both sick, in care facilities and apart from each other. My only solace was that at least mom enjoyed her chocolate I always brought her for her day – even if she hadn’t a clue as to who was feeding it to her – and Dad, while getting progressively sicker, knew who we all were and could enjoy time with us in almost the same ways as before he became ill. He could read the goofy cards we got him (we were never a family of mushy cards; it had to be fun and silly or it just wasn’t us!) and we would tie a balloon to his wheelchair for awhile until his grumbling made us take it off. But he would always proudly wear the wonderfully outrageous tee shirts I would get him as a present. It got to a point that the staff would come by to see what I brought him this time. Whenever he would wear one of those shirts the staff would smile and say to him “I see your daughter got you another shirt, Thomas.” That would make him smile; anytime something made him smile that would make me happy.
But no matter how the day would go there was still this bit of sadness because we had to drive a long way to get to his Veteran’s home and I would ultimately have to slip away from the burger bonanza (we knew we were doing wrong by his health but we always brought him burgers, fries and a malt on special days) to go talk to the nursing staff to handle business or to check on his kidney function levels. Nothing like going over the numbers on a chart that are telling me that my father’s kidneys are failing and only dialysis would help him. See, the problem with that was at the VA home they could not do dialysis and he would have to be taken so many days a week to a hospital that was an hour away for the treatment and the cost of going back and forth was sizable and not covered by insurance. Daddy put the brakes on that option by saying – and I quote – “Hell no! I am not going to go through that!”
Stubborn hard headed man but it was his choice and other than going through legal hoops I could do nothing but respect his wishes. We got into a few arguments about his treatment plans but in the end it was his body his choice and his mind was still pretty sharp so I had to let him chose to live and end his life they way he wanted to. Lord! That man was stubborn and to this day I feel that if he hadn’t been so he might have been spared some of the harshness and collateral damage (leg amputations) of the disease. Again, his choice. That is something that all of us as caregivers have to go through; doing this dance of what we think is best for the ones we are caring for vs what they want. I wish you the best if you are in the midst of this tango and really hope you never have to go through the process of legal guardianship for your loved one in order to take care of them – that can get ugly all around.
The first holidays after a death are always the hardest and to be honest they never get really easy – just not as painful. For Father’s Day I now send a wreath to his grave site and when I could I would go visit and sit on his grave and tell him all about how stupid his grandchildren were :) Yes, I would sit on his grave facing his headstone and have wonderful conversations with him. We all do what works for us. When he was alive I envied others who had father’s that they would go visit at their own homes or they would post pictures on social media of the family all surrounding dear old Dad at a family gathering or restaurant. Eventually I came to terms with those things and I stopped caring about what others could do or did and was just thankful that no matter his condition I could still touch his hand, stroke his beautiful curly hair, and offer him a beer even when it became difficult for him to drink one.
Now I just feel a bit sad, shed a few tears, and miss my daddy terribly but I am happy he is with mom and is whole again. For those of you who still have your father with you I hope you have a wonderful Father’s Day with him. If you are his caregiver I hope the day is extra specially good because the rest of the days are probably rough.
Happy Father’s Day Daddy. Love and miss you.
Today, five years ago, is the day that many of us who are caregivers either dread or are happy that it has finally come. Today was the day that the battle of mom vs. Alzheimer’s came to an end. We all know who won that fight and until they find a cure Alzheimer’s will always win that fight and take with it the person we once knew but will always love. They say that when someone is ready to pass on that they either hold on until everyone they care about has come to say their goodbyes or they hold on until those who they are about to leave behind have made peace with the whole thing and are ready to let them go.
In the case of mom and dad I waffled around with letting them go or not. There were some days in fits of frustration and anger that I cried out for God to come and get them and get them now! I’m glad the almighty chose to just shake his head at me and let them live on awhile longer. Because once I got past the frustration phase of being a caregiver (well, not entirely past there were moments when I still got pretty damned bent out of shape) I found my way through and learned to live in each and every moment I still had with them. Take note of that! It is important to live in the moment with them because that is all you will have. In dad’s case because he could still talk to me up until his sudden downturn; I held on for dear life with him. With mom, because the disease had taken her away from us all years earlier I wasn’t clinging as hard.
Mom decided when she was ready to check out by slowing down her intake of nutrients until she stopped entirely. Her advanced directive stated that she was not to be tube fed nor resuscitated if her heart were to stop; you may chose differently. So when she stopped eating and drinking we all knew it was just a matter of time until her tough old broad body finally stopped working. I am very thankful for the magnificent hospice people who took care of her (and me) during this time. I don’t think I could’ve made it as well without them. They bathed her, spoke softly and kindly to her, and made sure that when her time was near that there was pain medicine for her.
I came every day that last week of her life and could do nothing more than pat her hand, kiss her forehead and tell her she was good to go; I was cool with whenever she wanted to leave. I will admit to some moments of panic when I would call the hospice folks and beg them to send someone out to sit with her at some times when I couldn’t be there. For some reason I had this fear of her dying alone without anyone there who cared about her. Not that some of the nursing home staff didn’t care it’s just…well it was this paranoia I had. As it turned out on this day one of the hospice ladies was there to bathe her when she noticed the shallow breathing and then the last little exhale. She didn’t die with me around but she didn’t die alone.
The phone rang that early morning and I knew right away what it meant before even answering it. I threw on my clothes and rushed to the nursing home where they kindly pulled the curtains around her and gave me the privacy I needed to say goodbye to her. They even brought me in a muffin and some juice; not that I had any appetite then. I touched her hand one last time and noticed it was still a bit warm and then I said goodbye and proceeded to deal with all that was needed for the next and final phase of being a caregiver to her.
Funny thing, I never really had a good cry over her. Well, maybe sometime later I did I don’t really recall. That moment when you have that soul purging cry can come at any time and not always when you expect it! As Alzheimer’s had taken what was “Mom” years and years ago, this was just her body leaving to go be with her mind. I had been grieving for 15 years by this time so I guess I was almost grieved out…almost. Losing a loved one to Alzheimers/Dementia is never easy and I would suppose that depending on the relationship (spouse, parent, child, grandparent) how one handles it and grieves varies. Just know that you can and will get through this stage of caregiving and that you will never forget and always love that person.
(I know I’ve jumped all over the place with this blog. My original intent was to stick to the timeline of my time as a caregiver but we all know how that’s turned out ;) Will try to get back on the timeline with the next post.)