Archive for category life
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.)
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.)
I know I’ve gone way off track with what my original intentions were with this blog but I hope you indulge my zigzagging 🙂 Sometimes when I think back on that awful trail that went from mom being mom to her being just this animated shell, I find myself thinking what could I have done better (which is nothing more than a lesson in frustration and futility) but lately I have thought about what she (and probably many others with dementia) may have felt like during this.
Mom was fiercly independent, could drive her Fords with the best of them (Dad used to call her lead foot), always made and kept that hair appointment like clock work, and at one time was quite the fashion plate. Of course later after 6 kids she turned into a mom and wore jeans and sweats but they were always neat. But when the Alzheimer’s started to take her away all of that changed. She voluntarily stopped driving or maybe dad did some subtle suggestions. At least we didn’t have to fight with her about handing over the keys like so many other families have to. I don’t envy you who have/had to!
She kept the hair appointments for awhile and then that fell off with her resorting to wearing all sorts of hats. Then she stopped bathing and would often take the dirty clothes out of the washing machine and put them back in the closets before dad had a chance to wash them. And of course there was the phone routine as I’ve mentioned before where she would call me to look up a phone number for her using the excuse of she couldn’t find her phone book, read the print in the phone book, or just yell at me to do it because she was my mother and she was asking me to do it! She used the guilt card as long as she could.
Sometimes she would look embarrassed when she would forget something and other times she would get angry…at one of us. But in hindsight, she felt both. She knew, for awhile anyway, that something was wrong and she couldn’t do or remember things like she used to. Fear, anger, and embarrassment were probably all mixed in there and she had no idea how to handle it. Adding insult to injury, we didn’t have a clue about what the hell was going on either so we had the same emotions going on except we weren’t the ones with dementia. We could still drive and cook and do laundry properly. All those skills were leaving her bit by bit and all she could do was thrash about in frustration.
I will confess to not being the kindest most sympathetic person in her world when she was going through the early stages of this. I was dealing with raising young children in a crumbling marriage and having two sick parents (dad had diabetes) added to that mix made me a frustrated and angry person which sometimes came barreling out at mom and the rest of the world. I had my fears too! I was afraid that I would be stuck with taking care of them (which turned out to be about 80% true) I was afraid taking care of them would take a big amount of my time (it did) and I was afraid that I was losing my parents. No matter what we may say or think or how old we may be, we will miss our parents when they are gone. In this case my “mother” left me long before her body decided to leave. I had a mom but she wasn’t mom.
Caregiving ain’t for wimps let me tell you but conversely, being the one cared for ain’t a walk in the park either. Imagine having someone you gave birth to now doing for you what you once did for them – bathing, dressing, feeding, etc. Imagine that you can’t do for yourself things that you have done for decades – dialing a phone, driving, playing a piano, baking the cake your other half has always loved. And imagine leaving the home you once knew to live in a strange place with strange people who hopefully are going to take good care of you. Heck! I freak out when I can’t find my phone or keys or recall a name let alone having to deal with what those with Alzheimer’s and dementia must go through. It is scary! I wish I had known this when mom was alive and had shown her some kindness instead of my frustration. Once I began to come to terms with mom and this damned disease I became kinder to her and in turn I wasn’t as angry or fearful.
Recently the hubby and I were leaving the grocery store to head to it’s gas station when I noticed an older gentleman wandering the parking lot searching for his car. My dementia antennae went up! As we pulled into the gas station I jumped out of the car to watch him wander back and forth among the rows of cars. Finally I told the hubby I’d be back and I walked over to the man and with a warm smile I asked him if he needed help with his car. He was embarrassed but I knew what to do. I asked him what color was it and what make. I made jokes about not knowing a Chevy from a Toyota unless I could see the name on the car.
I talked gently to him as we walked back and forth looking for his white Chevy. Couldn’t find it so I asked him did he remember if he parked it close to the store or further back; eventually I asked him if his car had an alarm on it. He wasn’t sure and said he just had new tags put on the car and that’s why he was confused (I knew that as a sign of embarrassment) as he handed me the keys. Fortunately his keys had a button on them that when pressed would sound the horn. I pressed, it honked, we found the car! He thanked me and apologized for not recalling where he parked. I smiled and told him it was alright and we all forget where we park in these big lots sometimes. But before I went back to hubby waiting at the gas station I showed him what button to push to sound his car’s horn if he needs to find it again.
He drove off slowly and I prayed he got home safely without hurting himself or anyone else. Was he in the early stages of dementia or just an old guy with a momentary lapse in recalling where he parked? Either way it happens and is happening across the globe…but I’m so happy I stopped to help him; to ease his fears that day.
This week a sweet cousin of mine passed away from complications due to Alzheimers. And while we were not a pair of almost like siblings close cousins, I did know her. Our family is the type that if you are family then you get a big hug anyway when first meeting and ultimately get invited to dinner. I knew her when she was a sharp as a tack woman who dressed well and could get to anywhere she wanted like guiding me from my hotel to our Aunts house that first time I was in her town visiting.
When I got the news some 7 or so years ago that she was on Aricept because she was at the beginning stages of Alzheimers my heart just sank. No! I exclaimed…not another family member. At the time my mother was in the end stages of the disease. The once vibrant woman was now less so and had to have one of her nieces live with her to help take care of her. At that time she could still have a conversation with you – to an extent – but only for a short time. Then she would either not really converse or do the usual for this disease repeat herself.
Eventually she had to enter a nursing home because her condition had declined to a level her niece could no longer care for her at home. She held in there for some years until she eventually stopped talking, walking and ended up on a feeding tube in hospice. This week she decided it was time to go home and while she will be missed – especially by her twin – we are all thankful that she is now free from this damn disease.
When someone dies from Alzheimers or dementia it is a mixed bag of feels. Your heart aches because this person you knew and loved, no matter what their condition was at the time, is gone. No matter how many days a week you took care of them or went to see them at a nursing home, when they are gone your emotions go every which way. In my case I was happy I never had to set foot in that nursing home again! I was happy I didn’t have to see mom suffering! I was happy I wasn’t tied to being responsible for her and all of the paperwork, etc. that was involved with taking care of someone sick who was never going to get well! I was happy that mom was free from existing (it was NOT living) like that!
But I also had this strange ache that said no matter what condition she was in she was still my mother and while she was gone years and years ago from the disease, this “shell” that was still there that resembled her and liked chocolate who I called mom, was gone. I have a feeling my cousins twin, other sister, and the rest of the family is feeling various degrees of this too.