| Author |
Gathered Up:  Farmgirl Caregivers  |
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
 Posted - Jan 23 2020 : 9:51:40 PM
|
Hello sisters -
A few years ago when my somewhat young husband was diagnosed with an aggressive form of dementia, I had no idea just what it meant to be a caregiver. I had extremely lofty ideas about what I could and would be able to do, I thought I could handle everything. It wasn't long until I realized I couldn't do it all. My Wonder Woman cape was just as fictional as the superhero herself.  I sought out counseling for our family, I attended caregiver classes (completely lost it and broke down in tears the very first day!), and an incredible support group which really drove home how so many of us feel so isolated in this. One of my dearest friends started caring for her mother just about the same time my husband was diagnosed, God bless her; and I have to tell you, she is in the THICK of it. It's taking its toll on her health, her finances, her love life, her family life - you name it. At first we attended the support group together, but both of us found it nearly impossible to get there within a very short time. Thankfully, she and I keep in touch through texts and emails and an occasional visit... And some mornings I will insist she stop by on her way to her mom's home almost a half hour away, just so I can make her a nice hot cup of French pressed coffee to take with her - and give her a very warm, reassuring sisterly hug to help sustain her in her isolated moments when her heart is pounding and her head feels like it's going to explode. She is my rock in this, my inspiration. And I'll be honest: What she is going through frightens the begeebies out of me. I am dealing with some serious challenges with my husband, but I am not anywhere near where she is in this process, for lack of a better term. When I get there, however, I want to have her faith and strength and love and compassion and perseverance and grace to get me through. The one thing she does not do (and to be honest, I don't either) is take care of herself - something that was driven home to us in caregiver's class as being of utmost importance, to be put first and not even questioned. I am sorry, but that is just so much easier said than done. You do your best, but the must-do's and the needs of our loved ones are overwhelming. There is so much... SO much...
If you're a caregiver, I am sure you struggle with all of this, too, and more. This is the most difficult thing most of us will contend with in our lives, next to our own health failings, and the loss of those whose shoes can never be filled again. The challenges, the guilt that comes with failures, the joy in the little things that make the day feel like Christmas... the pain, the sorrow, the loss, the loneliness, the fears, the pitfalls, the worries... as well as the laughter, the fullness in the heart, the "God winks" (as another dear friend calls them), the blessings, the joys... the overwhelming GOOD as well as the overwhelming bad... We are all experiencing the same things, aren't we? And you know what - we are all are doing our best, and we are all going to make it. We will.
So, let's start walking this road together. It doesn't matter where you are in this walk, it doesn't matter that we are all dealing with different illnesses, different situations, different everything. We are all in the thick of it, or facing it, or have made it through. We need each other, girls. We need to know we're not alone. We need to share information, lend a shoulder, send an electronic hug, burst out in laugher or even in tears together. Let's just help each other through!
Where are you on this journey? Who are you caring for? What challenges are they facing? What challenges are YOU facing? How can WE help YOU right now? We are here! You're not alone!
Much love and warmest hugs -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
Edited by - Ninibini on Jan 23 2020 9:56:54 PM |
|
|
craftingram
True Blue Farmgirl
526 Posts
Karin
Nashville
In
USA
526 Posts |
Posted - Jan 24 2020 : 06:44:47 AM
|
Nini, I have missed seeing you on the Farm and reading your sweet, thoughtful posts. Have wondered how you were doing. Just wanted to let you know you and your husband will be in my prayers as you continue this difficult journey.
Karin
Sister #2708
Romans 8: 38,39 |
 |
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jan 24 2020 : 11:43:18 AM
|
Aw...Karin! It is so good to "see" you, too! I've missed EVERYONE so much! Things are hard, but there are also so many little blessings along the way that I would not have otherwise had, you know? I am grateful to be right where I am. ;) How have YOU been??? Thank you so much for your prayers. You will be in mine, too.
Thought for the day:
As a caregiver, one of the most difficult things is realizing that the person you care for, no matter what they are suffering from, is in their own reality. We cannot expect to identify with everything that they are experiencing, and we cannot expect them to jump out of that experience to conform to ours. We must be gracious and loving and as patient as possible when our loved ones are suffering. If they lash out, it can be hard not to respond in kind, but we really have to try. If they were not suffering so much, they would never treat us that way. I'm willing to bet if they could step outside of their skin, they would be horrified and cry - just like we actually do. And sometimes, we just respond in the wrong way. It's bound to happen. We are only human and when the pressure builds, we can take only so much. It's just like with a pressure canner: without that little steam release valve, the pot would blow. We need to find our own release valve, whether it be deep breathing, a walk, five minutes in prayer, or whatever it takes to keep the pressure levels down. You, the caregiver, are under a lot of pressure, but your loved one is, too. It's just a different kind of pressure. It's not us vs. them, even if sometimes it feels that way. We are neck deep in this together. When things go awry, try to talk yourself through the tense moment in your mind so you don't lose it. Remember the moment will not last forever (Even if it seems like it will - it won't!). No matter how difficult the moment, always remember you can open the release valve when the moment has passed. Isn't it so true: if we weren't so stressed out, it would be so much easier to exhibit the patience and love and grace we need to. It can be so hard to remember that you loved one is in the same stressful boat. No matter what happens, FORGIVE your loved one, and FORGIVE yourself. We must be kind to each other and to ourselves in the midst of this trial, in order to get through it. When all is said and done, no regrets!
What are your release valves?
Hugs and love -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
Edited by - Ninibini on Jan 24 2020 11:43:39 AM |
|
|
|
hoosiercountry
True Blue Farmgirl
572 Posts
karla
north port
fl
USA
572 Posts |
Posted - Jan 30 2020 : 7:52:06 PM
|
Dear Nini,
My eyes were full of tears reading your post. I had to go back and read what was going on in your life. I don't know how I missed it but I did and I apologize for that. Outside of being a Hands-On caregiver I also have many years in the nursing field. I did a lot of travel and contracts but nothing you do can prepare you for the hands on. There isn't really
much that I can add to what you have said. But I have to tell you one of the greatest caregiver I have ever seen, was someone whose husband I took care of for seven years, and she has since become a good friend. Judy took care of her mother who is in her nineties at the time with Alzheimer's while also dealing with a husband with ALS, and later would be on a vent. She had the,patience of Job, no exaggeration. Like you said she took care of what mattered, the first thing she let go was the cleaning of her house. And then herself. After her mother passed, she continued caring for her husband, who was on a vent, feeding tube, and totally incapacitated. When I first walked in and met them, her husband had no movement except his eyes and that's how he communicated with her by yes or no. I would later become very close with those two and I watched this woman care for this man in a way I've never seen. I always believe in quality of life not quantity, and she made sure she did all she could for him. I need to back up and say the only care / help she got what's 4 hours a day in the evening to help get him ready for bed that was it. Out of the 24 hour day she got four hours for herself to run errands or make his special diet she fed him.
I never saw her complain except about her back occasionally. I never saw her angry, I never really saw her lonely. As the years pass and the longer I was there I began to see love that you don't always see. She would talk with him an act like he was just normal. She would get him up to church, the beach, they would go to plays, or musicals, and twice a year she took him out on a passenger boat because he loved the water. All this while he's on a vent and could do nothing for himself. 98% of the time she did this by herself. There was no family
Being a caregiver of someone that was in the dementia process was emotionally hard for me. A very very dear lady that was like a mother to me developed it. I became her caregiver and I was not as great as I should've been at times. I live that old saying of too close to the forest to see the trees. I would be in denial of her not being able to do what I felt she could at times. And other times I saw her failing. I think that's the hardest part it's when you finally see and accept the mental failing that is happening before your eyes emotionally.
Taking care love yourself it's so easy to let go. Why should you worry about takeing a bath and you can probably do it just as easy tomorrow, or whenever you get time. I looked for those moments when you know they're in there, I know my lady but sit there and all the sudden what's wrong with me why can't I remember anything she may be okay for an hour the rest of the afternoon, those are the cherished moments.
The wandering what's not an easy time. I guess I got lucky because she stayed with in the house but how many nights I'd wake up and she'd be standing by the bed fully dressed, thinking it was daytime. I am thinking of you and lifting you up in prayer. I hope that there is someone that you can rely on to give some help. Caregivers do need help they are in a sense the Forgotten ones. People call and they always want to check on the loved ones but they need to check on us too. Just a simple is there anything I can do? What you do for your friend, a cup of coffee goes long way. I am glad you are going through the caregiver classes occasionally. And you are reaching out,and joining hands with others.
The best is to lean on God, find support, pray for the patience, strength, and kindness to endure for
both.
Hugs and Prayers Karla.
FGOM March 2018
I dusted once, it came back. I'm not falling for that again. |
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Jan 30 2020 : 10:45:05 PM
|
Amen, Karla. Thank you. And God bless you! I'm okay. I think the shock of it took a real toll on me for a long while, but now we're a few years in and now I can say it's just life. This is OUR story, but everyone gets something in life, and many get much, much worse. I'm grateful for being right where I am supposed to be. I'm grateful for God, my family and friends, my dog who keeps me grounded and feeling loved, YOU, my farmgirl sisters who are always there and always extremely forgiving about my lack of response... It's just overwhelming, as I am sure you all too well know. My personal mantra has become, "I'm just one person." I do try to prioritize and forgive myself for the things that I don't cross off the list every day; but it can be frustrating at times. I'm sure all caregivers go through that. To say this new lifestyle is an adjustment is definitely an understatement; but the unexpected sweet, happy moments, like you mentioned, are just such joyful gifts to the soul. They fill our hearts and sustain us. Such a beautiful thing.
You know, you have touched on so many issues that I think we all really need to talk about a little more.. perseverance, prioritizing, patience under pressure, being stretched beyond what we ever realized we could be, making most of precious time, the LACK of time (they don't refer to it as "the 36 hour day" for nothing!), precious personal time (what is THAT, right?!), QUALITY of life and going the extra miles to have and provide it (AMEN TO THAT! God bless your dear friend Judy!), feeling inadequate, losing sight of your loved ones actual abilities, denial about their illness, the personal guilt, acceptance, finding peace, losing oneself to the situation, cherished moments, the shocking things, the deepened spiritual life and importance of prayer, the aid (or lack thereof, which more often than not is the case) of family and friends, the simple gestures that mean everything, the lifelines... You GET it, and you have touched upon so many things I'm hoping we can all sort through together! Thank you!!!
I honestly don't know where to start with all of this. There are just so many things, and their urgency changes from day to day, sometimes moment to moment. So, please girls, jump in when you can. I assure you, whatever is on your heart and mind is on all of ours as well!
Hugs and love,
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 05 2020 : 06:45:56 AM
|
Hey girls! Good morning! Thinking about you and praying for you all today!
I am wondering how you handle taking over tasks for someone who really wants to but can't do them properly anymore? For example, dispensing medications or personal care or driving/taking the keys? A person's independence is so important with respect to dignity and self-worth. This can be a very delicate subject and tango. What do you find is the best way to handle these kinds of things?
Hugs -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
hudsonsinaf
True Blue Farmgirl
3162 Posts
Shannon
Rozet
Wyoming
USA
3162 Posts |
Posted - Feb 05 2020 : 07:58:44 AM
|
Good morning Nini! Oh. how I have missed you! You have been in my prayers my dear sweet friend! How is your hubby doing? Your son? I so wish I lived closer so we could go get breakfast or dinner, or something!!! I love you dear friend, an will continue praying for you and your situation!!!
~ Shannon, Sister # 5349
Farmgirl of the Month - January 2016
http://hudson-everydayblessings.blogspot.com/ |
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 05 2020 : 9:57:40 PM
|
My dear, sweet friend! How I have missed YOU!!! I will have to write or email you to catch up. Things are okay. God sustains me! :) It WOULD be so awesome if we DID live closer! What fun we would have! SO much fun! I really hope one day we can have an annual Farmgirl Jubilee where we all meet and spend a few days together - live and in person! What fun that would be!!! SO much fun!!! Love you!!!
Girls - I do have another question I am hoping some of you can help me with. Well, actually, it's for my girlfriend who cares for her mother. Her mother gets stuck in the past, and forgets that so many things have happened since then. For example, she gets very upset that her husband has been gone for days, completely forgetting that her husband passed many years ago. When my girlfriend tells her, she gets upset that nobody told her. My girlfriend tries to remind her, but that only gets her more upset and she calls her daughter a liar. Then out come the pictures, the documents, the cards, etc., or there is a trip to the cemetery, or her mother insists on calling people who have passed to get confirmation that her daughter isn't lying to her… stuff like that. It's terrible. My girlfriend always goes the extra mile to find ANYTHING to calm her. Distractions or changing the subject rarely work. My girlfriend says it's mind-blowingly painful to see her mom go through this, not to mention how difficult it is to calm her down. Worse yet, she has to relive some very traumatic memories every time her mom goes through this. Her mother also tells her all the time that she wants to go home, completely forgetting that the home that she misses was sold 20+ years ago when she remarried - which she absolutely has no recollection of whatsoever. That starts an entirely new line of insults, accusations, etc. My girlfriend goes through this EVERY SINGLE DAY. It's maddening for her. Do any of you have any suggestions as to how she can handle this to cause the least stress on her mother as well as on herself?
God bless the caregivers. God bless the caregivers.
Hugs and love -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
hoosiercountry
True Blue Farmgirl
572 Posts
karla
north port
fl
USA
572 Posts |
Posted - Feb 08 2020 : 8:14:29 PM
|
Hi, Nini,
I wanted to share a couple things that kind of made life a little better / easier for us. I got a big calendar And we sit down together and scheduled days to do things. Sunday was beginning of week, we would pre-set medications together. I always acted like I was learning. How she did it and what the meds were for. I just acted like it was a learning process for me and she was showing me.
I would have her check the calendar every day and tell me what we were doing that day. Important to cross off each day .
We would schedule 2 or 3 days of the week for complete showers. The other days sponge bathing was ok.
Now the driving was a bear to deal with. I was able to find a car key that looked very much similar to the one that we used. Only it didn't work, It was a one that was not made right, so when she went to try the car wouldn't start.
For your friends mother, I so sympathize for what she is dealing with. We dealt with that, after a while of fighting a losing battle I tried things like, oh he's at work, he went to the meeting. I had a friend whose husband is a truck driver,and we would tell her that he's out helping so-and-so on the truck. It would work some, the books will tell you to orient them to present time, but books don't always know everything. We would tell her that the house was being painted or worked on or some excuse as to why she couldn't stay there that day. To tell her that she sold the house and it was always go into an argument always. And you can't always rationalise the truth in their mind. So I found it easier on myself to makeup false stories. And pray that God understands. I didn't have any idea what tomorrow will be like or what memory would be trapped in her mind, playing it as it comes along is the best any of us can do.
Take care of your self. That is soooooo important. Many Hugs. Karla
FGOM March 2018
I dusted once, it came back. I'm not falling for that again. |
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 11 2020 : 3:39:19 PM
|
Oh, Karla.. I am so sorry you experienced all of this, too! But thank you for sharing your experience and suggestions - you are such a blessing!!!
These are such EXCELLENT suggestions!!!
I will definitely try your medicine suggestion with my husband. It might be easier for him if he thinks he is teaching me a thing or two! ;)
I also love the calendar suggestion! It would work great for someone who loses track of days, especially! I will tell my girlfriend!!! With my husband, this might not work so well because he obsesses whenever he has anything upcoming like an appointment or an event or a gathering to attend. He gets really out of whack. And then also if there is any little speed bump that alters what he expects - wowsa! Not fun! But you know, I think it still might work. He does refer to the calendar in his phone, which I constantly update for him. This way all three of us will be on the same page at all times!!!
And I agree with you - it'd be so much easier and more merciful for my girlfriend to make something up to ease her mother's mind. She is afraid, however, that her mother will eventually distrust her if she does so. To be honest, though, I question whether her mother always trusts her 100% anyway when she is in this state of mind, you know? And yes, I think God definitely understands, because He does say in Matthew 9:13 "I desire mercy, not sacrifice." Maybe I'm pushing that concept a little bit, but the way I look at it is that she is sacrificing her sanity and her health - as well as her mothers - when they go through this over and over and over every day. I don't think God wants us to kill ourselves when caring for loved ones, and I don't think that God would want us to allow our loved to go through unnecessary stress while they're already suffering with this horrific illness. Neither of those are good sacrifices unto the Lord - they bring death, not life! It is within our control to make the situation better, our loved ones do not have that same grace - they need us to make loving decisions. It's so hard. The point is to make our loved ones comfortable and happy and help them live a good life within the confines of their illness. Being merciful, saying something reassuring and easing her mom's mind with something appropriate to get through the moment really is probably way better on both of them. I will talk with her about this, maybe what you have shared will help her. Thank you!
Thank you... Really, Karla... thank you! And God love and bless you for all you did for your mother... and still do for all your loved ones!
Hugs -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
Bonnie Ellis
True Blue Farmgirl
2474 Posts
Bonnie
Minneapolis
Minnesota
USA
2474 Posts |
Posted - Feb 11 2020 : 8:25:15 PM
|
I have also been a care giver to my in-laws when they were alive. My job wasn't too hard but I want to say God bless you to all of you who step up and do the job!
grandmother and orphan farmgirl |
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 13 2020 : 11:41:08 PM
|
God bless you, too, Bonnie! God bless you, too!!!
Karla - I meant to tell you how much I appreciated your recommendation about the keys... My husband's key went through the laundry accidentally last summer, and now any time he tries to open the door with it, the alarm goes off. That being the case, he never uses his key to open the doors, he waits for me to unlock them. Since they are so expensive to replace, we haven't done so yet. HOWEVER I am honestly not even sure he has tried to drive since that happened.. I'll have to see. If his key doesn't work in the ignition, I am pretty sure he would be fine handing it over and not having it replaced. I'll have to see if it works in the ignition! We are managing to keep him from driving, but it's a struggle. If his key doesn't work, then maybe he will just accept not being able to drive!
Thanks again for everything! Really!
Another very difficult thing to do is to have your loved one accept help with personal care. It's such a delicate subject. When it came to that point, what problems did you encounter? How did you help your loved one accept your help?
One thing my husband had difficulty doing right away was shaving and grooming. Ever since we were dating, I had been cutting his hair (or shaving his head), trimming his beard and neck, etc., and after a hand injury about ten years ago, he even started letting me help shave his face. But after he became ill, my assistance was this was unwanted, even rebuffed. Part of it was that he just didn't care anymore. He would let himself go. It wasn't depression (although he was very depressed at first), but rather he just didn't care or see a need for shaves and a haircut. So one day my son offered to take him out for breakfast and while they were out he suggested they both go to one of those sports themed barber places together. My husband wasn't too receptive at first, but my son kept saying how his own hair was getting a little too long and his own beard was looking straggly. He asked if Dad would just go with him and wait while he went in. Dad said yes, of course. When they walked in, however, my husband told my son to sign him in as well. He came home looking so handsome that I kept gushing! Since then, it's still a struggle getting him to go (sometimes he looks like a very wooly, haggard Santa after an entire night of deliveries on Christmas Eve!), BUT he does eventually go, and he DOES feel so much better afterward. It kind of hurts a little that he prefers to having a stranger do these things for him, rather than me. I do see that this is one way of him holding onto his independence, however. My pride can take the hit. All I care about is that he feels good... and boy does he look good! :)
If you've been here, you know how hard it can be to help your loved one see they need help with self-care, and allow you to do so. I am wondering how you handle it with our loved one? Do you have any suggestions to help make it easier for them to perform self-care? Do you have any suggestions as to how to help them ease into the idea of letting you or someone else help? Such a delicate issue...
Hugs -
NIni
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 19 2020 : 9:14:58 PM
|
Hi girls!
I was talking with my childhood BFF yesterday, and I was explaining to her how my husband now likes to constantly BLAST the volume on the television. It's like he can't hear or something, but his hearing has been tested, and it's okay. And, without going into detail, sometimes it seems like he is just watching the pictures, and really has no idea what is happening. My ever-so-wise BFF asked what other issues he was having, and one of the things I shared with her is that he has this "bad habit" of constantly saying, "What?" when someone is speaking to him. One day I asked him, "When you ask, 'what?' is it because you can't hear me, or is it because you're having trouble understanding me?" His response was, "understanding you." I asked if it was because I spoke too quickly, to which he responded no. I asked a few different things, which he dismissed. But when I asked him is it that he doesn't know what the words mean, he replied, "That." So I know he is having problems understanding words themselves. My BFF suggested that perhaps when he watches television he is turning up the volume thinking he will understand the words better. I had not considered that! She shared that she herself finds it difficult sometimes to follow what is being said on the television, sometimes due to an accent, or because the actor is speaking too quickly or to softly. She resolved that problem by turning on the closed captioning feature. Since then, she always knows what is going on! I thought how absolutely brilliant that is! Next time I notice the volume is getting louder, I'm going to try the closed captioning for my husband. I am not sure how much this will actually help HIM, as he has had difficulty reading for the past couple of years, to the point my beloved former avid reader has stopped reading books and newspapers. BUT maybe the shorter sentences with closed captioning would help him a little when things get confusing. I'm sharing this with all of you, however, because I am sure that some of you are caring for people who might benefit from this. Please let me know what you think, if you find it works, or if you have any other ideas to consider! Hugs - Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
Edited by - Ninibini on Feb 19 2020 9:16:35 PM |
|
|
|
levisgrammy
True Blue Farmgirl
9436 Posts
Denise
Beavercreek
Ohio
USA
9436 Posts |
Posted - Feb 20 2020 : 06:52:07 AM
|
Nini,
I was once where you are though not with dementia but in other health issues caring for my father. Some days were very hard and other days were as you say, like a bit of Christmas. More often than not it was hard. Given my dad's personality made it even harder. I cried a lot. He had his mind though his body was failing and knowing that made it difficult. Because of our relationship, I'm the baby of the family and was always treated so, he did not think I could handle certain things so he would not let me but being the only one here to do it made it a real struggle. He never wanted a nursing home and I would never have dreamed of putting him there. He was a month shy of 92 when he passed and I only had the privilege of having him with me for 4 yrs. The last two of those bringing the real health challenges. You are so right. We do not put ourselves first and I had a difficult time when it came to everything else also as there was no help in housework or cooking etc. I was still expected to care for my own family as well as my dad. A support group is an excellent thing if you can find time to go. For me I couldn't even get time for the grocery store until it was the bare bones.
I will tell you this I have a gem of a daughter and my father loved her dearly. She would come when she could and give him a haircut or just give me a half hour break. It wasn't much to her probably but it was a lifesaver to me. He was more willing to let her do certain things for him. But she also had a young family and he understood she could not be here often. Dad passed in 2017 and I was a mess for quite some time. I am fortunate to have had many friends here who helped me through as well as family.
I am glad you brought this up because it is so important to cheer one another on. Praying for one another!
Big hugs to you. You and your friend are both in my prayers.
~Denise
Sister #43~1/18/2007
"Home is where we find comfort, security, memories, friendship, hospitality, and above all, family. It is the place that deserves our commitment and loyalty." William J. Bennett
"Thy Word is a lamp unto my feet and a light unto my path." Psalm 119:105
http://www.ladybugsandlilacs.blogspot.com/
|
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Feb 22 2020 : 07:20:59 AM
|
Oh, Denise... I am so sorry. It really was a privilege to have that time with him, although terribly "imperfect." You are such a blessing! I am right where you were. As Grandma would say, " 'Tain't easy, McGee." But what in life comes easy that is of any true value? I pray those "Christmas moments" truly are the ones to sustain you! Remember: your Dad had those moments because of YOU! Your love and perseverance sustained him. And that is treasure beyond measure! God bless you, sweet friend!
My cousin is a recent survivor of leukemia. She went through hell, and the one recurrent subject that comes up when we discuss her experience and my husband's is the shock at how beloved family and friends tend to scatter in the midst of a loved one's suffering. While she was ill, all she wanted was the comfort of a loved one nearby. My husband truly is the same way. I think part of the reason loved ones shy away is that they simply don't know what to say or do. Some people outright told my cousin they were afraid to see her all pale and wasted away. One of my best friends in the whole world, who was there when we met and was right there to witness and be part of our love story, who was my MAID OF HONOR, outright told me she will not come visit because she doesn't want to see and remember my husband, who was always so full of life and laughter, like THIS. People don't mean to be cruel. They know their limits. And expressing those limits tactfully can be challenging, I'm sure. But if they could only see that the person they know and love is suffering, and if they only realized that their mere presence in the midst of all of this would be to the person like a fresh, cool drink of water in the desert... Makes me cry. I'm sorry. And they truly don't realize that it would mean the same to the caregiver. I realize people have their own lives - I don't mean giving up hours of already overloaded time to do grandiose things to help. But as caregivers, do people really think WE like to see our loved ones suffering and being diminished by illness? Do they really think WE don't care about "having a life?" If it is hard for someone looking in to fathom it, just imagine what it does to the heart and mind to the patient and the caregiver! And the caregiver, just like everyone else, needs a break; needs to feel like a human being rather than a robot. Just a half hour to get out in the fresh air by oneself is like a gift of gold. I truly believe that unless a person goes through this oneself he or she will never realize how all-consuming this is for patients and caregivers, so I truly do not judge others. People simply do not realize. But when it is 3:00 AM and I am scrubbing down the shower tile and toilets, yet AGAIN, because this is my only time to get to it today, all my heart cries out for, aside from my husband's healing and life and love to be full again, is for someone to just care. Isn't that crazy? It only takes a quick text to say someone is thinking of us and praying, and in that split second, everything changes and I feel transformed - strengthened and inspired to forge on. Just... because... someone... cares...
Having said all of that, you know who, out of every one in our lives, has been there most? It has been YOU my sisters. Not our family; not nearby huggable, living, breathing friends.. but all of YOU. You girls have sent emails, cards, treats, little handmade gifts... every single one has breathed life into my heart at exactly the right moment when it was needed most, and I thanked God and prayed for you. Every single one of you. I haven't always had a breathing moment to acknowledge your kindness, and I deeply apologize and thank you for your grace in understanding. Please know every envelope and email you've sent, every stroke of the pen and key, has meant EVERYTHING to me. God bless you, God bless you, God LOVE and BLESS you! There are surely some of the shiniest haloes and most beautiful wings awaiting in Heaven - they're earmarked for MaryJane and all of the Farmgirls, to be sure! And you just KNOW Portia and Ruthie are up there smiling and waiting for each of us with the warmest of hugs, while attending to every perfect detail! :)
Hugs,
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
Edited by - Ninibini on Feb 22 2020 07:34:32 AM |
|
|
|
amomoffour
True Blue Farmgirl
75 Posts
Ruth
Cañon City
CO
USA
75 Posts |
Posted - Nov 14 2020 : 6:04:32 PM
|
My husband has been recently diagnosed with dementia although I truly believe that it has begun within the last year or two. I am so very glad that there is a place to go to get support here on the connection. I am joining a local support group soon and have the support of my children, church family and friends. I'm looking forward to getting to know all of you and to help each other through these difficult times.
Ruth Farmer
Sister # 8246
Ruth Farmer |
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Nov 16 2020 : 10:55:40 PM
|
Oh, dear Ruth... I'm so sorry this is happening to your family. But yes, you have us, too. We're here. And if you ever want to chat privately, please feel free to email me any time.
You are very, very blessed to have such a great support system. That's awesome. The one thing I have found is that the support of good friends, especially those who are going through this, or who have gone through this, and who really understand what it is like, is one of the greatest blessings. My girlfriend cares for her mother, whose dementia is advanced, and I, my husband. Some days a quick text to say "I'm praying for you," is all either of us needs to get us through those "flashing red light siren" moments. Sometimes it's a little joke that's sent or funny cartoon that changes everything. Sometimes she is just so stressed I get up extra early to make her a fresh cuppa coffee and give her something warm to eat on her way to her mom's. I know she doesn't have time to take care of herself as she should. And when I needed help with a cleaning job that was just too overwhelming for words, she popped in out of the blue, rolled up her sleeves and got right to the task. It was as if this huge burden was lifted, even though the job was still before me. Even though I was embarrassed and didn't want her to do it, I needed the help. She knew it. I need to remember God wants me to allow others to bless me, too, so they can have their moment to shine. So HUMBLING. Such a wonderful friend. God bless her. Her partner and my husband were best buds. The two of them have been the most wonderful source of support. There just aren't words, only tears to express what blessings they are to us. God bless them. God bless them. God bless them.
I'm so glad you're going to join a support group! We did, too. Before we went, my friend and I took a caregivers class, which was full of really great information, but the most important message was truly about taking care of ourselves in the midst of this. Easier said than done, without question. Sometimes she and I would look each other and silently say to each other, "Yeah, RIGHT!" BUT having each other's support has truly been one of the most important self-care gifts we have given and received.
We attended the support group for a while before the pandemic, which was also helpful. But I will be honest: there were more days than not I left in tears after listening to other's stories. I'm a strong girl, but sometimes hearing what they were going through was just so terribly overwhelming, heartbreaking and frightening. Their stories made me want to put the brakes on our life and stop the world from turning so time would stand still and my husband's dementia wouldn't progress. And yet, they taught me so, so much, and generously answered any questions I had. It was so great to have that kind of preparation - to know what was to come, and to hear the positive things they did to handle the challenges they faced.
And when things happened here at home that I just wasn't prepared for, these wonderful people knew just what to say, had the perfect advice and were always kind and understanding, when almost everyone else in our life truly were clueless or would say trite things off the cuff as if they were experts and I should just get over things. Man, could I tell you stories. Well meaning people sure can do damage without ever meaning to. I forgive them, though. I do. It's not their fault. They just haven't experienced this. They truly don't understand and truly don't know what to do or say. Heck, a lot of them just aren't around anymore BECAUSE they don't know how to handle it. I get it. I do. And life goes on around us, even when ours seems to get stuck in this time of suffering. I hate the expression with a passion, but it's true: it is what it is. Sadly, the support group has disbanded due to the pandemic; but we are all looking forward to getting together again when things are safer. I'm sure we will have LOADS to share and discuss!
I have to also say that it has just been such a blessing to be able to be home with my husband and care for him. The changes in him can be quite shocking and overwhelming, and it can be extremely frustrating at times being the one to do everything like some automaton. Sometimes I feel like I'll never catch up with my chores due to all the appointments and interruptions and crazy things he does that inadvertently thwart my plans and break my stride! BUT, truthfully, I'm learning to accept that perfection isn't what I need to strive for: it's quality. I'm getting a lot better at this, even though at the same time it's getting more difficult. I'm learning to appreciate our "quiet time" together, realizing we truly don't know how much time we have, anyway. I want to make what we do have count; make it life-affirming, safe and warm. And I want to make memories. GOOD ones. Ones that will carry us both, together or apart, and help us through whatever comes.
I'm learning to be kinder to myself and to focus on my accomplishments and successes rather than on my failures and shortcomings. The right perspective helps tremendously. And I suppose the same could be said with respect to how I face the challenges alongside my husband. It is so much better for me to focusing more on what he CAN do instead of worrying about all the changes in him that prevent him from doing what he used to do. And even though he is dramatically different, he is still my sweetie. Regular hugs make all the difference. ;) There are times when I feel more like a mother to him than his wife, which is weird, but it's okay. It's what he needs. Sometimes he is just like a little boy. He can't help it. So I have to love him through it, just like a good mother does. Sometimes he is a frustrated and upset man, and I support and encourage him through it, just like a good wife does. Most times, he is just quiet and contented to sit and stare at the television. That used to bother me tremendously because he used to be such a work-a-holic and such a social butterfly. But now I feel there is just a quiet contentment between us; something precious we used to enjoy on long car rides, or when we would walk through the park, or reading the paper over coffee at the breakfast table. Now it's just this peaceful, abiding, loving trust that we share; an unspoken promise kept that we will get through this together, somehow. And we do. And it's a beautiful thing. Different, but beautiful; and I am grateful for it. I actually find great wisdom in his "ability" to just tune out and be peaceful. I'm learning to tune out the chaos around us and to go meet him in his happy, peaceful place more and more. At times it has actually saved me from absolutely losing my marbles in the midst of all the must-do's and pressures and chaos of being a caregiver. "Too many hats, one pretty little head," my dad would say. So, please, Ruth... When you feel that way... Take off your hats, make yourself a cup of tea, and just revel in the good that surrounds you. Because it's there, it's definitely there. It's just all too often overlooked in the midst of this craziness. God loves you. It will be okay. Somehow. Just keep the faith. And when you can't find it, you know where to find me, sister!
Hugs and love -
Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
Edited by - Ninibini on Nov 16 2020 11:14:04 PM |
|
|
|
YellowRose
True Blue Farmgirl
7109 Posts
Sara
Paris
TX
USA
7109 Posts |
Posted - Nov 17 2020 : 05:20:53 AM
|
Nini, I am not a caregiver so thanks for helping me understand what you and others go through each and every day. Prayers for you and Ruth.
Sara - FarmGirl Sister #6034 8/25/14
FarmGirl of the Month Sept 2015 & Feb 2019
Lord put your arm around my shoulders & your hand over my mouth.
|
|
|
|
Ninibini
True Blue Farmgirl
7577 Posts
Nini
Pennsylvania
USA
7577 Posts |
Posted - Nov 17 2020 : 09:05:01 AM
|
Sara.. I just adore you, sister. You always make me smile! Thank you. God bless you. Love and hugs to you! - Nini
Farmgirl Sister #1974
God gave us two hands... one to help ourselves, and one to help others!
|
|
|
|
Tall Holly
True Blue Farmgirl
2305 Posts
Holly
Worcester
Vermont
USA
2305 Posts |
Posted - Oct 01 2021 : 1:47:25 PM
|
Hello,
I am late coming to this thread. I cared for our neighbor who was like our guardian aunt when she had her mind. Lucky for us she and her partner had been doctors and lawyer and had put away enough money so she could be at home and eventually she allowed caregivers to help.
It was very hard seeing someone who had been such a bright spark loose her ability to communicate. When I took her keys to her car away she was so angry. She held onto that anger but could not remember whey she was angry with me. She called several times in the first couple of days to ask why she was angry with me. I told her. She mostly regretted not being able to volunteer any more. In her retirement she had been a hospice volunteer sitting with people so their caregivers could have a break. She could do most of the Sunday New York Times Crossword puzzle. School learning did not come easily to her but she worked hard to pass all of her classes. She was a very compassionate ER doctor. Over time she forgot why she was angry with me. While she still had enough of her mind she donated her car to a neighbor whose car had died and had no money to buy a new one.
She was a voracious reader. It was hard to see her ability to understand the concepts deteriorate. She read non fiction because there was not a story line and then resorted to reading Children's books. Her favorite was "Walter, the farting dog". We found books that she had under lined as she went along so she could keep track of what she had read.
I had an arsenal of a dozen stories I recycled. They were from her youth that she had told me or later on. It did not matter whether she heard the same story in an hour several times or not. I could get her to laugh.
Her sister came to visit once. I told her do not test Libby. But she did and could not understand why her sister could not do things anymore like she used too. I wanted to hit her up the side of the head or shake her to get her to be kind. Luckily Libby did not remember or understand that she was being tested. As you can see her lack of compassion still bothers me and Libby passed more than eight years ago.
Hugs to all of you who continue to give care.
Holly
farmgirl #2499
|
|
|
| |
Gathered Up: Farmgirl Caregivers |
|
|
|
Farmgirl Caregivers
