I’ve been busy with life and trying to enjoy myself as much as possible but whenever my ears perk up at the sound of a conversation about caregiving I’m right back in the moment. Case in point, while waiting to board a plane I overheard this woman talk about being a caregiver to her widowed father long distance. Her caregiving was compounded by her own health issues which included some shoulder problems.
She was telling this young man all about her health issues and how she wasn’t able to lift her dad; how they had a home health worker to come in to do that for his bathing, etc. and how she was probably going to end up moving out to wherever to help her sister with him. I thought the young man she was talking to was someone she knew but as he said his goodbyes he was just an ear to bend for her.
Well someone else came up to her (merely to check out departure times) and away she went telling the same story again. I began to wonder if this woman had any other life than talking about her health and the health of her father. Seriously. But I can understand…a little. I feltho a bit ashamed when I had thoughts about the poor person who was going to be seated next to her for a four hour flight. I know, shame on me.
Then there was this meeting I attended where we were congratulating someone on being promoted and being transferred to a different state. I had a chance to talk to her later that day in private when she mentioned that she had to tell her family that she was doing this transfer for herself and her life. Their jaws all dropped because – guess what – she was the responsible one for taking care of her father. Mind you, she had help from her siblings but the majority of the responsibility was on her.
She had “the chat” with her family members and told them that she was the only one looking out for her (she was a divorced career woman) and that she had to do for her. Eventually they saw where she was coming from and they will have to figure out how to do things without depending on her. Amazing, but really not so, how when it comes to caregiving there is almost always some one individual who is THE responsible one.
Often that responsible one puts various degrees of their lives on the shelf in order to do that job; I did. Oh I tried to juggle the whole scene of wife, mother, employee, sibling, caregiver as best I could but in the end all of the hats I wore suffered some in quality as I tried to be the best caregiver I could for my parents.
Being the responsible one is a major task that many do not fully understand the ramifications of unless/until they too become that person. After my tour of duty as I call it was over, I didn’t want to be responsible for anything for awhile even though I had become so used to calling the shots that I would often have a tug of war with myself over letting go or keeping the control. Being responsible is a weighty task physically, mentally, emotionally, financially, etc.
Are you the responsible one?
This past Sunday was Father’s Day and while I still miss my father, I wasn’t that broken up about it…this time. How emotional I get about certain holidays and birthdays varies; I think I am moving on and I am not that saddened when these certain times come around. Oh sure I still and will always miss him but I just don’t cry like I used to. But on to what this post is really about.
Dad, like mom, was not about going to the doctor for anything. Home remedies where their mantra even though they did take me to the doctor because I had asthma but as for them? Short of something major – and I do mean major like needing stitches – they never went. So as mom continued to spiral down into Alzheimer’s, his body was failing him and an insidious disease was beginning to creep through his body.
I had noticed that dad was limping more and my concerns were brushed off with the cursory “I’m fine, just getting old!” At the time he really wasn’t that old (late 60’s, very early 70’s) but I knew something was wrong; again as with mom not what. Push came to shove and after some pleading and nagging and his realizing things were not getting better I found a doctor to take him to. I believe he was an internist and I regret that I ever took him there.
Why? Well it took hell and high water to get him and mom to that office (I had to beg them for a time period when other people wouldn’t be there as by this time her behavior from the dementia was getting out of hand; more about that side of the visit later) and once there I had to stay out in the waiting room with mom to keep her from bolting or doing something not socially acceptable. Therefore I couldn’t go back with dad to ask any questions or to express my concerns.
Dad was having great difficulty walking by this time which was so different from how they both had been a few years earlier before mom’s dementia came calling, when they used to go mall walking; and he often had to hold onto things like walls or chairs or whatever was handy to move around. When he came out from the exam room mom made straight for him and began to tug at him faster than he could walk towards the door out.
I had to try and do three things at once: watch out for mom, watch out for dad being pulled by mom, and try to have a conversation with the doctor. The doctor told me that he felt that dad had the beginnings of Parkinson’s based upon his quick assessment of taking vitals and watching him walk back and forth; he had the shuffle walk, stiffness, and poor balance which can be attributed to Parkinson’s. I don’t recall if he was given a prescription or not although I do have a vague memory of trying to keep the two of them together at a pharmacy one time.
If there was a prescription given I am sure daddy took it for a few days, didn’t feel any change in his condition, and then stopped taking the medication – sigh. As time went on his ability to walk became more and more difficult with him having to use a cane and then…. I will save the and then for a future post because guess what? He didn’t have Parkinson’s. It was something else, something that eventually took both of his legs and eventually his life – diabetes. What he was experiencing were the nerves (neuropathy) and blood circulation in his legs being damaged by that disease.
What I am trying to encourage you who are at any stage of caregiving is this. No doctor on this planet is God. They make mistakes and some of them are really crappy. This doctor didn’t test dad for anything; he just had him walk back and forth. I’m sure dad did not tell him everything about his symptoms and that is why I wish I could’ve gone back there with him. Maybe if he had gotten a proper diagnosis the diabetes might have been controlled and his standard of living might have been better. Maybe. I implore you that have loved one you are caring for to do your damnedest to talk to their doctors (if and when you can get them in) about the symptoms and signs you see about their health.
True, medical professionals go a bit bonkers over patients who come in with a self diagnosis after having seen one commercial too many or after having surfed WebMD.com but I’d rather you drive them crazy and ask them to rule out something than to miss it all together. You have to be your and your loved ones advocate when it comes to medical care. Doctors don’t always get it right, patients who are afraid, elderly, sick, or with dementia don’t always tell the full story.
When in doubt (and if you can afford it) get a second opinion!
Oh the things she would do when dementia first started in on her. Some of them were funny as heck and others were scary and downright dangerous. I have a friend whose mother had Alzheimer’s too and her mom would put things like the dishes in the freezer. My mother never did that but she developed other weird quirks.
I’ve mentioned the calling me to look up a phone number for her but she had others. She was afraid of direct deposit of their retirement checks into the bank and HAD to take the check straight from their mailbox to the bank and then take out a wad of money to keep in the house and on her for whatever reason she had.
I begged her to do direct deposit for their safety sake but she never did it. She would lay in wait for the mailman when it was time for the checks to arrive, would grab the mail, and then make poor daddy drive them to the bank, do business there and then back home. Only to go right back out again to pay their utility bills – with cash – at the grocery store as soon as those bills arrived.
It was like something in her head was telling her that if she didn’t pay the light bill on the day it arrived they’d cut off their power. But that money thing was terrible! She always hid some money in the house; like with some old TV programs where they kept the money in the mattress, she would hide it wrapped in foil in the flour canister or even wrapped in foil again (what was it with her and foil?) and buried in the crisper under the veggies. Part of that was because she was a child of the great depression but that was compounded by her increasing dementia.
Mom and Dad never had a checking account or a credit card and they paid for everything in cash or money orders. It wasn’t until her dementia had really progressed that I was able to get dad to do direct deposit but that was as far as I could get with them. We never knew how much money mom carried around on her (yes! on her) in that wallet of hers that she either had in a front jeans pocket or tucked in her bra (that used to embarrass the heck out of me and my sister) until she had to be admitted/committed to a psych ward because of something she had done (more about that one later).
It took me and two big burly orderlies to wrangle that wallet away from mom when she was admitted and once I took the myriad of rubber bands she had wrapped around it off, I discovered that she had been walking around with almost $500 dollars on her all in twenties! I nearly freaked out thinking that mom had been walking around with all of that money on her and “what if” someone had tried to hurt her as she was out and about.
Here being put into that psych ward and separated from dad for the first time since he was in the military was heartbreaking for me and Dad and I’m sure in some kind of way Mom was hurt by it all too. It wasn’t a pleasant or beneficial experience and another that I shall delve into later. But it was yet another thing we had to worry about and deal with with my parents until they both entered homes.
Finances are a big sticky thing to deal with when the person is your parent and it can get very complicated when your loved one has dementia regardless of your relation to them. There can be so many variables at work at any given time. They can lose the ability to manage funds and either over spend, fall prey to con artists (and some of those might even be other relatives), or hoard the money in some interesting places. When you try to help they may vacillate between appreciating the help to accusing you of theft all in one breath.
If you can get the legal papers to let you help or fully take over their finances then life will be so much easier but up until that time all you can do is continue to try – exasperating as it may become – to help them as best you can and to watch out for warning signs that something might be wrong. But however you deal with your person and finances try to be kind with them even if you want to scream sometimes because losing the ability to do things that they have done for a very long time is embarrassing, depressing, and scary to them.
I was going to proceed with the progression of life with mom and dad as their health spiraled out of control but a good thing happened yesterday. I was a guest speaker (I suppose that’s what you could’ve called me) at an online Twitter chat – #AgingChat to be exact (I do recommend those of you with a Twitter account to follow it and @Beclosedotcom) The topic was “Is it Dementia or not?”
It was a great chat but what pinged me the most was two questions: 1. How do you tell the one who is ill that they are ill and 2. How to you get family members to help out. For question #1 the best things suggested was to either let their doctor tell them or to sit down with them in as calm a voice and manner as possible and try to let them know your concerns without sending them into a panic or giving them news that may be interpreted in a very very bad way. Remember, when trying to tell someone you think they may have some serious memory issues that can be absolutely terrifying to them; the could react angrily or burst into tears or any other combination of emotions.
In my case when I tried to tell mom as awkwardly as I could at the time not knowing what the hell I was dealing with anyway, mom nearly bit my head off! She became like a cornered animal claiming I was out to get her, get into her business, and try to say she was crazy. I backed away as fast as I could and gave up trying to convince her she needed to see a doctor. I wish I had had more resolve to keep plugging away at getting her to a doctor.
But what about asking for help from family members? In some wonderful families there occurs this thing called a family meeting where everyone who is/will be involved get together and they hash out how things will be handled. Sorry to be so cynical but in my lifetime I’ve only read about this; I’ve never heard directly from anyone who had a cohesive family unit deal with someone ill or with dementia in an evenhanded manner.
Nope! What I dealt with and what several people I’ve known have dealt with is one person being THE responsible one with others helping occasionally (sometimes after being upbraided by the responsible one) or with family members either saying they will help and don’t or just make all sorts of excuses to not help at all. There is always a blow up or two..or three or four when you have these family dynamics going on.
When I first tried to talk to my siblings about mom I got a bit of a brush off with phrases like “Well she’s old what do you expect!” and “Heck, I forget things and repeat myself too!” I’m sure some of you have heard things like: I don’t have time to take off work to help. I’ve got a family at home to take care of. I don’t like the looks and smells of a nursing home. S/he isn’t going to know I visited or not (cringe). I live too far away. This also may apply to some spouses/significant others. Sigh…
At first I had one of my sisters help me out pretty often but as time went on that lessened, another would only come visit mom if she went with the other sister, and two lived out of state and only were able to make phone calls. I appreciated those phone calls. They let staff at the nursing homes know that I was not alone in caring about moms care.
Ultimately everyone I’ve known who has been in this situation tried with family members the best they could until an explosion or until they reached a point where they tired of dealing with the stress and drama and just dealt with it themselves. About this time is when hired help (if affordable) such as a visiting nurse or aide or adult day care comes into the caregiving equation or the caregiver gets very very tired and stressed themselves.
But as I’ve said before, you have to push through and you will push through. Trust me on this. Ask the family doctor for tips on how to bring up your health concerns to your loved one. Seek the assistance and experience from agencies such as Alz.org who have a hotline number that is 24/7. Find either an online or in person support group. And try to talk to family members about helping out or what to do but know how far to go not so much for their sakes but for yours!
When you are a caregiver to someone that’s ill, someone you love…how do you feel about it? The emotions can run the gamut from feeling oppressed and depressed to feelings of martyrdom. I’ve seen them all and have at one time or another felt them all. Why? Because they were my feelings and my feelings were legitimate!
I was confused when mom first started showing behavioral changes. I felt hopeless because not only did I not know what was going on but I didn’t know who to turn to. I had others, including family members, brush her mental changes as being part and parcel of being old and that I was just a worry wart. I knew something was wrong I just didn’t know what or what to do about it.
So like many of us who are afraid and confused only the outer symptoms were addressed (keeping clean, food intake, not letting her drive) but what was going on underneath – the heart of the matter, the meat and bones – was left to fester until it was too late. Fear, ignorance, and denial are a deadly trio for anything in life. Please don’t let that gruesome trio take you over in whatever you have to face in life.
Then panic set in as I realized she wasn’t getting any better and her behavior was getting worse. “What are we going to do about mom?” I’d ask my sibling and dad. And everyone had their own opinion but what I now know should’ve/could’ve been done wasn’t because of the evil trio. So then it devolved into frustration and anger. Those two emotions were because I felt I wasn’t getting any or enough help from my siblings or dad for that matter sometimes.
Frustration led to fatigue as I tried to do as much as I could with what I had along with living my own life, raising children, and working. There were so many candle ends burned it was absurd. Then when anger saw that my guard was down it slithered in and I began to get angry at the world and God for what was going on in my life; in my parents lives. I was tired, angry, and many times in tears.
I forgot to mention embarrassed. I didn’t know about dementia support groups at the time and when mom was still able to go out with us I was ashamed of her behavior and her outward appearance. I would either walk ahead of or behind mom and dad when we all went out together because while I wanted to keep an eye on them I didn’t want anyone to connect any dots.
When my parents had to be placed in separate nursing homes I felt like I had failed some how to do better for them. I felt angry that they let themselves get this bad health wise and at times I wanted mom to just die. And do NOT get me started on dealing with legalities for them. I was worn out because I was trying to be all things to and for them. I was desperate because I knew I was slowly losing my parents and I wasn’t even close to being ready to be an adult orphan. In the midst of all of the turmoil I still loved my parents as I am sure you love the one you are caring for.
And I felt all alone because I was learning about how to take care of their needs physically and legally with on the job training. I learned things the hard way at first because I didn’t know where to turn. Eventually I found about the Alzheimer’s Association and found an online support group which saved my sanity and as time went on I learned what battles to fight and how hard to fight them.
So why am I telling you this? It’s because you too may be feeling any number of these feelings right now as a caregiver and I want to say that it is alright to have those feelings. You are human too and the task you are undertaking is an enormous one. You are doing things because you have to, you want to (and sometimes you really don’t want to have to), you need to and sometimes only you understand what you are feeling and going through.
No matter where you are in your job as a caregiver be it all alone or with an entourage of help and support, your feelings are yours and they are very legit. There is no need to apologize for them nor to feel guilt or shame. Keep doing the best you can…
Yeah I know that was melodramatic but that is how dementia and Alzheimer’s is, it is a darkness that looms over everyone’s heads. But I want to talk about the light instead of the dark; tell you a little about mom before she was stolen from us especially since this weekend is Mother’s Day. Let me first say that mom was by no means a winner for mother of the year. She did some things that I don’t want to talk about that weren’t always the nicest or best to do.
She could tan our hides with a spanking, made us do all kinds of chores while she sat and relaxed, made me clean the fish that she caught when she used to go fishing with one of my sisters (oh how I hated doing that with a passion!), was overly protective and didn’t allow me to do some after school activities in high school, and got into a major row with me on the day of my first wedding. Sometimes mom was all about mom but I want to show that she was a mother to me in the best sense at times before she became ill.
She did do some very motherly things in her time. I can recall having the measles and being bored out of my mind stuck in my room so she made a bit of a bed on the sofa and let me lay down there to watch television. She wasn’t able to travel when she had all of my siblings but when it was just me, she sparked the travel wanderlust that I now have by taking road trips out west. And she could drive with the best of them! Lead foot is what daddy used to call her.
I got to see things that many of my friends in elementary school wouldn’t get to see (if ever) until they were adults. Part of the reason we went out west a lot was because at the time I had terrible asthma and doctors told her that being in the Arizonan climate would be good for me. They were right. So before I was even ten I had seen big cattle ranches in Texas, spent the night in a log cabin near the Grand Canyon (I also nearly gave my mother a heart attack when I tried to climb between the railings to peer into the canyon), had a blast at Disneyland, saw them making a movie in Old Tuscon with Angie Dickenson and Robert Mitchum (who waved at me), and nearly gave mom another heart attack by crawling into one of those Indian cliff dwellings in Arizona even though the sign clearly said Beware of Rattlesnakes.
Mom took care of me through all of my injuries and sicknesses – with a serious side of being fussed at about them – the best she could. There were many trips to the ER for my asthma, a broken leg, stitches in my hand from a broken glass while doing the dishes, and your usual sundry mishaps that many children go through. But she also pawned her wedding ring to help pay for some of my medical bills because money was so tight.
When I first made her a grandmother she transformed right before my eyes into a sweet and loving woman. Who are you and where is my mother I thought. You see mom was never vocal or demonstrative in her showing of emotions except to dad. I really cannot recall her ever saying I love you to me or being that touchy feely, but with her grandchildren? Oh yeah!
They could do no wrong and she would cook their favorite things for them to eat when we came to visit. Dad taught them how to play (and cheat at) poker and she would talk your ear off about them to others showing their pictures to you. She didn’t have an accordion of pictures that fell from her wallet like you’ve seen on some cartoons but she did have a few.
Once when she was holding my then newborn daughter for me at the mall while I went into a store for something she disappeared and sent me into a panicked frenzy when I couldn’t find them. Turns out mom was walking up and down the mall showing off her grandbaby to anybody she could corner.
She always, up until dementia took her, had a smile and a big hug for her grandchildren but I’m at a loss to recall getting hugs from her. It broke my heart to see my children – the youngest grandchildren she had – lose their grandmother when they were so young. Oh she was physically still there but that was about it. But to this day my son can still recall her spaghetti and carrot cake fondly and that makes us both smile.
So for this week I too would like to remember the better things about mom instead of the Alzheimer’s. Happy Mother’s Day mom and Happy Mother’s Day to all of you.
Mom used to be good at keeping herself and the house clean. She had a standing, nothing short of the end of the world would cancel her appointment, appointment at the beauty parlor that you could set your watch to and every Sunday no matter what, when I was a child she would make me mop the kitchen floor. But as the dementia crept over her it changed that woman into messy Bessy.
It is common for those with dementia and Alzheimer’s to change personalities and habits which includes keeping clean. Mom went from doing the laundry faithfully to Dad taking over. I don’t recall if she could no longer remember how or if Dad took over for safety sake but whatever the reason was he was doing it…that is when he could get the clothes off of/away from her.
She would take clothes out of the hamper thinking they were ok to wear again or she would sleep in the clothing that she wore that entire day. The hair appointments slowed down until they ended and her hair was just there with no style at all. But bathing? I don’t know what Dad did to keep her clean and to be honest I was embarrassed to ask or to do anything about it.
Mom bathed me, I just couldn’t bring myself to bathe her. I was beyond weirded out – super awkwardness. The most I could do when I dared try to tidy her up was to get her into the bathroom by saying I wanted to brush her hair – or something along those lines – and then while talking to her constantly to keep her occupied and calm, I would do my best to give her a sponge bath… to an extent.
For those of you who have had children do you recall when your little ones loved playing in the water at bath time and then one day they were terrified of it or would have tantrums? Yep! Almost the same thing with adults with dementia. As I wasn’t about to try and cajole mom into the tub lest one of us (probably me) would get hurt I left it at a nice warm soapy wash cloth nice and I’d spot clean her face, neck, arms, under arms, and legs. Well, the legs if I could get her out of her pants which didn’t happen often; the shirt was a tough enough job to peel her out of that many was the time it was just whatever I could get to with pushing up sleeves.
But her private parts? I couldn’t do it! Just thinking about it I feel awkward. But it is very important that those parts of the body be cleaned because they are prone to the skin breaking down and becoming infected. Even more so if your loved one has or is beginning to have issues with incontinence. If you cannot afford to hire a home care worker who knows how to bathe someone with dementia and you have to do it, what can you do?
Here is a article from Caring.com which has some useful tips on how to deal with bathing mom (and dad too) which I found to be very helpful and informative. At the end of the article they mention that if your loved one really isn’t for bathing then you could talk to their doctor about anti-anxiety medication to help with the process. When mom entered the nursing home she became even worse about bathing, eating, and everything else because she was terrified! (more about that in the future) She was eventually prescribed some medication which they only gave her before bath time which, along with a kind nurses assistant, made bathing easier.
It’s a scary road to travel for you and your loved one. Don’t be hard on yourself; just keep trying until you find what works.