
Many of us, myself included, come from a dysfunctional family which adds a lot of weight to the challenges of caregiving. I have read stores on various threads on other topics and decided it would be good to have a thread just for this topic for people to share, vent and discuss.
The idea for this thread originated on the thread named "The Caregiver....How are YOU doing today?"
So far my mom's care has not interfered with work. But my sister is flaking out on me and I may have to take time off once we get the neurologists diagnosis. I don't know how long it will take to go to court for mom's attorney to put everything in a conservatorship. Unfortunately, my sis is named first on the DPOA and she is putting everything on me right now. She has only made arrangements with Verizon Phone to send mom's bill to her house (she lives out of town). Instead of coming here to mom's house with the bill, she is going to send it to me so I can make sure it is paid. Yes my sister has health issues, but if she is not up to the task, then she needs to say so instead of being so selfish in wanting to be the "Big Cheese" but not really doing anything. I am tired of cutting her slack because of her health. This is not about me wanting to have control, it is about common sense in caring for our mom and she has admitted to me several times that she is sick and tired of dealing with mom's issues. Seriously, mom was abusive and a horrible mother to us, a horrible wife to our dad...but...she has dementia for God's sack. If you can't get past the abuse mom dished out freely and whole heartedly to all of us, then you should not be in control of mom's best interest. I could go on and on but I won't. I am going to call the union tomorrow to get the number for HR because they will not give it out at work. If the neurologist diagnoses my mother as incompetent, then I may have to take the FMLA while we go through the court process because I can't depend on my sister to give me a day off and she clearly is only interested in being in charge. Like I said before, this is not all because of her health, she just is not willing to sacrifice anything and herself always comes first. I can see where this is going to come between us and I may have to fight her in the end to have the conservatorship in my name. When my dad was in a nursing home here in town which is only a 45 minute drive from her house, she hardly ever came to visit him. Dad was her favorite. Maybe once every 3 months she would come down here. Anyway enough, the more I rant the angrier I get. Hugs to all!!
Margeaux –… So sorry that your mom is progressing. It is true that they lose weight. I always thought it was because she kept walking and walking. I think she was a sundowner. In the afternoons, she would walk back and forth in the yard for hours. Then her disappearing acts at evenings. Mom rarely talked in her normal life before the dementia. This didn’t change when she had her dementia. I just remember her always calling for my father’s name over and over. She didn’t ask questions or spoke in sentences. He was the only one who could calm her violence. Father made up for it in spades. He can nag for hours, days and weeks over the same topic…
Dabs –… I chuckled a little when you said that mom was having a conversation with the answering machine. Father talks to “invisible” people. I keep thinking we have Real Visitors but no one is there when I check. Now, these people scare him because they’re just standing there looking at him. Ugh!! Sorry, I just cannot watch scary movies. I even scream watching the old cartoon Scooby Doo. It just creeps me out when he “sees” all these people. (What if they’re Really Spirits?)
With regards to your friend, if there’s complications and she is needed badly, she can either find a co-worker willing to come in ASAP to cover for her (and she will owe her the same by covering for that person in the future.) If she’s at home and gets the call, then she will call work and tell that she cannot come in due to the medical emergency. At that time, she needs to speak to the doctor –most likely it would be the attending nurse – if she can get a doctor’s excuse using the hospital’s letterhead explaining that due to so-and-so, she was there for her Aunt or Uncle so-and-so, on this day, etc… Have her keep a copy of this letter for proof that she had one and submit it to the office when she comes in to work the next day. It’s important that the doctor explains the Relationship of the patient with your friend. Due to the HIPAA privacy, I don’t know if the doctor will be willing to do this. So ask what he can give.
sharyn, I really do think you are doing a great job with your mother, and I think she is very fortunate to have you. Your sis is a bit of a case. She does need to let go if she cannot manage the duties of DPOA. I think you have a wonderful attitude about your mum -yes she was abusive, but she needs help now. I feel the same way. I am waiting in the wings for the time. Right now I have to protect myself, and she has backed off. But if/when the time comes I will be there. You have to decide how to handle your work situation, I think you are wise to trust your gut feelings about your supervisor. It does seem that the burden of caregiving falls on your shoulders. Like book, I wonder if your sis will be tight fisted with money for your mum's needs. I think checking with your ER dept about time off is a good idea. I think you are right being preoared to fight for conservatorship. Are you documenting the things you do, and the things your sis does in order to back yourself up if it comes to that? ((((((((hugs))))))
Margeaux - I am very happy that Gary's mum is recovering. She has a way to go and is not strong. He is worried about his dad if mum goes first. Mum would manage without dad, but dad falls apart without mum. I think he would die very soon afterwards if mum goes first. They have been married 65 years. Yes, the efforts of years ago are oaying off for me. My ex says he knows he lost a good thing when we split, and that I am one if the most important people in his life. My beginnings with my dil were not good -she was still married to her ex when she started dating my son. I let them know in no uncertain terms that I thought this was a bad idea for them, and she should get her divorce ASAP so they could get on with their lives. I felt very strongly about it. She did divorce but held a grudge against me for several years. I worked hard to repair the relationship, and finally when I gave her a fancy pink (her favourite colour) birthday cake, it turned around, Since then we have been growing closer and closer. I had always longed for a dil I could do girly things with and it is happening. She and my son are really "parenting" me at times, and so is my ex. I have to say I have been in tears of gratitude recently, as I had precious little parenting when i was young. Re choc - I buy sugar free choc online. Sugar, white flour etc cause inflammation and my body does not feel good. I avoid them as mucb as possible. Sorry to hear that your mum is declining. Even though it is inevitable, still it is not nice to see.(((((hugs)))))
dabs - I had to smile at the picture if your mum having a conversation with an answering machine, and yet at the same time it is tragic to see a person who was once so functional become like this. It is not good that this friend's daughter is staying there. Would the friend be receptive to you telling her this is not a good idea as it is too hard on your mum?. Can you make a back up plan for mum's meds for when her CG is off sick. Could you lock up her pills somewhere so she doesn't mess with them? Thanks for the tight hugs -we all need them.
Love and blessings to everyone
Hi book - the support I am getting now is invaluable. I have lived a life with support from friends but not from family. I wouldn't say that ex and I are STILL on good terms -we weren't when we split. We have rebuilt our relationship with the grace of God and a desire to stay in one another's lives, especially after Gordie died We still love one another - always did and always will. but more just as family, not mates. I am thankful. I absolutely cannot imagine how you manage what you do with the little support that you get. I can't watch scary movies either. I do agree with not pissing off your boss. Trying to keep it on a good level while at the same time stick up for your rights. ((((((hugs)))))
Hope everyone has a good day. I seem to have developed that cough that has been going around, but don't feel bad otherwise. Cold FX to the rescue!
Anyway, last night was a rough night but this first hours of today have been pretty marvelous! Mom is allowing some of her friends to come over this week, which tickles me, we found out that financially we are solid today and she is alert and up. Good morning =)
Thank you. Yes, it is sad. As I said before, I could hear it in my sister's voice as she told me about this incident a sense of going into the unknown w/our mother's condition. She's in charge legally and medically and lives with mom. I don't, but visit and relieve her when needed. My sister is very capable, responsible but also the ultimate controller.
I was looking up the stages of ALZ the other day, and apparently can overlap.
Well anyway, I did have some moments of having to face the reality that one day mother may not be able to recognize any of us.
Dabs, can I call you that? How insensitive of your mom's friend to stay there with her, and bring family along. It's interesting how people like this seem to not have any clue about the disease either, "but even her friend can't believe the change in mom." I have a close friend, who will ask how mom is doing. I've explained many times, that mom can't hold real conversations with people. This friend, will say something later, like mom is still functioning like the rest of us, w/o ALZ.
You'd think that people who are close friends of a person afflicted with this condition, would inform themselves. I know in my friend's case, I've chosen to give her very general updates about my mom, because sometimes it gets on my nerves to have to explain to people, more than a couple of times, especially about the impact upon communication ALZ affects.
But needless to say, this friend has super over stayed her welcome, hasn't she!
Your mother still sounds as if she is very active. My mom does a lot of sleeping.
I've always wondered, why it is that doctors would choose to ask an elderly patient for the SS#. I think many people sometimes don't remember that, even w/o ALZ.
I'm wondering, did your mother make the arrangements to allow these people to come to stay in her home?
I've observed, from my own family an attempt many times for people to maintain things, old friends with respect to someone w/ALZ the same. But the reality is, things are distinctly different. Whether the person afflicted with it, or the caregivers realize it or not, there are some major adjustments to be considered.
O.K., Dabs, please don't over do it, w/those dinners. Although, I'm sure it sounds as if you want to keep mom happy, etc., but a visit as such is a lot of stress too.
Much Love & Light!, Margeaux
Joan~I so appreciate your words. I know in my head that I am doing right by my mom, but because I am so sensitive (things said to me by others), I feel guilty that I should be doing more for my mom. This is where my confusion with my boss comes in.
I took mom out to pay the city and PG&E, then we went to a grocery store. After that a hair cut. Then I went grocery shopping for us so I could make spaghetti sauce which is cooking now. I don't grocery shop at the store I work simply because I don't want to go to my work place on a day off...weird, I know!!
I know what you mean Joan about waiting in the wings with your mother. You are doing great in regards to your mom, setting those necessary boundaries, but still being there for her. I wish my sis could get her mind around that concept.
I will end with a special moment with my mom today. After all the running around we did together, she gave me $2.00 to help with gas!! How special is that!! Bless her heart for thinking about me and I will treasure it!! Hugs to everyone!!
It must be difficult for you to be dealing with a supervisor such as the one you have. By all of your descriptions of how she does her job, it somewhat sounds as if she is playing employees, one against the other. Lately, I have heard of situations in which people say they're Christian. I've always thought, that it's real easy to fly whatever banner one likes, but really I don't think this kind of talk should prevail in any work place. Besides, not everyone is a Christian. No offense to anyone here who is. This boss sounds manipulative, if I may say so.
I didn't want to say it before, but from what you describe, this is the feeling I get.
Please empower yourself, by knowing the policies of your company regarding all of this. You have enough to contend with, without feeling as if you are doing something wrong, no less at your job. Much Love & Light! Margeaux
Margeaux - you are going through some grieving with your mum declining and also, probably wondering what next you will face with your mum. Aging is not for sissies! (((((hugs)))) to you too.
sharyn - sounds like you have a wonderful friend by your side. I have a few of those and the are priceless. sharyn, I have the utmost respect for what you are doing for your mum - just tell those voices and the guilt to go back where they came from, (you know, that hot place). Your boss is overstepping her boundaries. I sure understand that you want to shop somewhere that you don't work. I wish your sis could appreciate that this disease has taken over her mum. $2.00 for gas is just precious! - gave me a big smile. Very sweet, I like the idea of keeping a scrapbook ir records of these things. You will treasure it later.
I know you are still hurting about your nephew and the pain he and all the family are going through, the unfairness of it all., It is not easy. (((((hugs))))) Joan
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I don't know what stage he is at, or what drugs he takes although I think he is on something that is supposed to slow down the progression of the disease. His wife slips a sedative(Lorazepam, I think) into his coffee when he starts to get agitated, especially in the evening, but not too often because she doesn't want him to get addicted. It helps a lot. He sometimes knows that she is his wife, but other times is scared that his wife will come home and find him with "another woman" (her). He thinks Al (his son) is one of his old friends from back in the day. He gets quite verbally abusive toward his wife in the evenings or when he thinks she is keeping things from him. He gets fixated on ideas, such as thinking that someone has stolen or hidden his car. On holidays, he is constantly mistaking his whereabouts for some other place. When he comes to Fort McMurray, he often thinks he is in the USA. He no longer asks questions about the oilsands when he is here, as he used to. His memory is only for a few minutes, as he will often ask the same question only a minute or so after he has been given the answer. He still plays Solitaire, but does it wrong and his wife is constantly trying to correct him. He can read the newspaper sometimes, but only aloud and of course with no retention. Wherever he is, he picks up and hoards papers - flyers, newspapers, showbills, etc.
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Ideas???
Thanks
Any more news about your mum? ((((((hugs)))))
I do need to not let the words of others make me feel guilty. Just as all of you have said, it is easy to judge and criticize what someone doing, but until you have walked in their shoes for sometime, you have no right to make assumptions or judge what that person is doing.You know, we had a new minister at our church back in the mid 90's. He was 45 years old, fresh out of seminary. He hurt a lot of people because he was very opinionated about certain situations. In one particular case, he went to a nh to visit people who belonged to our church. He came across this elderly man from church whose wife had him placed because he had Parkinson's Disease. His wife had severe osteoporsis with cracks in her spine so she had considerable pain and could not help her husband with bathing,etc. Well the minister had a fit because in his opinion, this man should not have been in a nh and he told the elderly man just that. It created a big problem for his wife and she was furious with the minister for having said that to her husband. Yes the minister is only human and makes mistakes just like the rest of us but he should have inquired about the situation with his wife. Anyway he did apologize but one has to keep in mind that this minister's father and mother were living with him because his dad had Parkinson's. In our church the minister can be married, we are similar to Catholic being that we have communion, our minister's are called priests and our service is similar to a Catholic service with traditions following seasons in the church. I guess I am saying that sometimes a person gets too gung ho on their religion. I am going to play it cool and see what evolves. I have to not say anything about my mother which is hard sometimes.
Joan, thank you so much, I too have much respect for you. You say what needs to said, and you say it in a way so it does not hurt the person to are communicating with. I appreciate that, I know I go off the deep end sometimes, and you and Margeaux have helped me to see things that I was not seeing. Remember when I first started posting, I had so much anger at my mother, and look at me now. Seeing her differently is because of you, Margeaux, Book, Ladee, Beck and others on this site and I wish my sister could let go of her anger. Yes, the $2.00 was just too cute. I told my husband about it and he laughed about it. If that happened a year ago, I would have been angry at her tight fist. Thank you all so much! Love and hugs to everyone!!
Margeaux - I remember when mom's personality started changing. I was in my 20's and had decided in college age to get to know my mom. She was a housewife but she did not coddle, encourage, hug, etc with us. Most of the times, she sent us kids outside to the yard or the bedroom.which we would spend hours there. I decided at age 19 or 20, that I wanted to get to know mom. I even persuaded her to go walk with me to the Vietnamese restaurant. OMG. I saw her in action - she didn't like this or that. When I contradicted her (it's Not salty, mom), she would get so angry - I can see it in her eyes. Scared me. This was the look that she reserved for father when she attacks him with the knife. That was the last time I ever took her out. I saw the side of her that terrified me. I remember telling siblings that she's changing, that something is wrong, etc...No one believed me..except father. But, I just wanted to say that with my mom, I mourned as she changed. Not so with father. I can see where your sister is affected by each and every change. Sis is there with your mom constantly - like I was with my mom. Sis telling you the changes she sees - was like me telling my siblings. I remember being so frustrated that no one was taking me seriously. I Am NOT saying that you are doing this. My family did...and Still Are Not Helping despite 20 Years later...I know you mention lots of things here, but sometimes, something just stands out - and I focus on it only. I Am Not in any way implying anything. Just saying that reading about your sis describing your mom, reminded me too with my situation back then.
Emjo, I have read over and over on this site what happens when you take a person with dementia to places OTHER than home. They definitely do not like New things or New faces or Confusing loud Noises (like a party, or family get togethers) I don't have time to search for it here on AC, but over and over it is not good...especially if he becomes very agitated in the evenings. She will have her hands full, and he might just walk out without her knowing and then they will be looking for him in a strange place. We were very fortunate with mom that all the times she walked out in the late evenings, we found her. There was one man who had Alz - he walked out in the evening with his dog - and never came back or found. The family lived near the road and also in the boonie area.
Sharyn, research, research, research - both on company policies about family leave and being called in for "emergencies." I still say don't rock the boat because jobs are very hard to find. If the company "lets you go", it would be scary but you must list this last job in your job application. No guaranty that your former job would be neutral and not blacklist you. Find a way around this. Unfortunately, everyone here on island knows that when you work in a retail store, grocery stores, hotels and restaurants - you have not fixed hours. They call you when someone else did not shop up to work on time, etc...It's a high rate of turn over on employees. .... By the way, I laughed when I read your day with mom and the $2.00 gas money. Boy, I was worse than her! I was a full time student and I would make money sewing clothes for fam. I made dresses for mom for only $10. And sis' 2 piece very short dresses for $10. Etc... When I went out with friends, I would only tip them $1.00 for gas! =)
I have been gently encouraging mom to allow a few more trusted people into this part of her journey. I have mentioned that because she wants someone here 24/7, I could really use an hour or two to myself now and then.
Today she finally allowed a co worker she likes quite a lot to come for lunch. Just before the woman came, my mom asked me not to leave because she didnt want her friend to feel obligated to stay with her
uhg
The visit itself was big progress, so I will wait and see what comes next.
Does the company really need you because they are short of staff? Can they still work productively with one person short? If her message is not a subtle request but truly asking if you want to come in, then just text back that you're currently unable to come in.
tired now so I will post more tomorrow
Toonnie is reaching out to hold hands again -what a cat!!!
nite all Joan