I have mentioned my sister before -has VaD and probably some AD since her memory is going. Tonight my niece-in-law (Rhonda) asked if I would consider moving back. She said Medicaid would pay me. Now I can't just think about it but will have to seriously think about it and decide. She mentioned moving into the house (there is plenty of room) but I told her would stay in the motorhome since that would be less confusing for Art. Daytime we can be in the house. I need to take a couple days and drive there and assess the situation for myself. See how my sister is doing - really doing. Guess showers are a problem especially getting clean when she takes one. Guess she fell sometime in the last few days. That must have traumatized little brother that lives there. He use to be a sound sleeper but now he jumps at every loud noise, then goes to work all day.
I am torn between wanting to be there for my sister (she is 13 years older than me) and staying here where we have made a life or as much as one can. There will be isolation because there are no neighbors to walk around and talk to. Also, the weather but then the summers would not be as hot. I would also have to find new doctors for me. The VA there would be better than here especially since he still has his neurologist there. Plus, here if there is an emergency medical situation, I would have to either use a local hospital and Medicare or drive to Spokane. In Vancouver the VA hospital is across in Portland but they also have an agreement with a hospital in Vancouver in case of emergencies that can't wait for the drive to Portland.
IF I agreed, I would like to wait until the end of May when I have my 2 year cancer checkup but that is 4 months away and they would like someone sooner. This is all because the Medicaid social worker said she is still pretty independent and doesn't need 24/7. Since the nights are only going to be around 30 and days upper 40s, maybe we will go visit this weekend. Nice gas is so low it won't cost much.
Again, like we all have to do - put our spouses needs before ours. In this case, it would be my sister and husband. Not sure I am ready for it. I will sit down and do a 'pros and cons' list the next few days.
Oh Charlotte, I don't guess you know me,and I don't want to be presumptive. But definitely give this idea a trial run if you are even considering this option. And please give the trial run a little longer than a weekend. Almost anyone can survive a weekend.
In the spring last summer I offered to take my partner to stay in BIL and SIL's house for two weeks to stay with brother's MIL. That was before my partner swung steeply into a downward descent. I thought fair is fair since, because of my offer, they had not made other plans. So off we went. To put it mildly, it was like herding cats. And I love both these ladies, don't get me wrong.
We went to church. It took the priest and me both to lift mil off her knees after she kissed the saint's feet.
I took them out to dinner and MIL was incontinent and needed help changing. I had to engage waitress and tell her it was her job to reassure my partner that I would be back from the wash room as soon as possible.
My partner kept thinking we were going to be shot because we were in someone else's house, not recognizing that it was her brother's home of the last 20 years. She moves and hides things. She did not know where the bathrooms were ever in the two weeks we were there. SIL has a garden full of tomatoes, MIL is not ever ever ever supposed to eat seeds, but there is a garden full of tomatoes.
I'm a story teller and I could go on and on and on, in the sad sweet way that we caregivers tell stories about the ones we love. I was packed and could not get away soon enough when they returned. The two weeks were when you do the impossible because you know there is an end in site.
You have to know that after you move things will not get better. With AD it does not, it only gets worse. And my partner and I will not be providing respite for family again. Much as I know my SIL and her mother and love them dearly.
Frankly, it sounds like you need to run the other way.
First of all, double check with Medicaid yourself to make sure you really can get paid. In New York, immediate family cannot be paid as the Medicaid caregivers, because the rationale is that immediate family would be doing it out of the goodness of their hearts. In will be in black and white in the state Medicaid regulations--talk to their social worker and make sure she has checked with her supervisors and that they all know what they are talking about.
Having said that, I still wouldn't do it. You have Art on your hands, which is enough of a killer. Remember, he is only going to get worse. You have your own health problems and you need the network of support that you have (such as it is) where you are living now. It isn't as if you would be moving because they are going to help and support you. It sounds like it is all about turning your and Art's whole life upside down so you can help support them. I think they and your sister's social worker need to put together a plan of care that does not include you being a caregiver.
Now, having said that, I'll say that you are doing the smart thing to go over there and take a look. If you and the family can work out something where you have a nice bunch of cooperating adults--helping each other--so it goes both ways--that might be worth considering. Maybe. But be very careful...very skeptical...protect yourself and Art. The two of you are your first priority.
Did I mention that I'm not thrilled about this idea? (Sorry--being too opinionated.)
I don't see this move to be of any benefit to you, and it is loaded with potential problems that you don't need. Sometimes, the priority for kind-hearted people is to protect themselves.
Charlotte, You've told us that you and Art retired from your previous jobs to become Workampers, which gave you the benefit of freedom and mobility. Then AD intervened. You've often said you can't wait to place him so you can get your life back, maybe even take off in your RV if you can get the hang of driving it for a distance. I don't see how Rhonda's plan fits in with either the style of life you have chosen or your dreams for the future.
I also don't see how turning down this offer would harm your sister. If Medicaid is willing to pay you to care for her, it would also be willing to pay someone else to do it.
I'm sorry, but I wouldn't even consider this offer. After going through being a caregiver for the past 10 years, there is no way I would do it again, at least not where I would have the full responsibility of caregiving. I would maybe volunteer at the nursing home where my husband is, just to sit and talk with the other residents and give them some love and hugs. I love the people there and talk and hold hands now and they tell me they love me and it makes me feel good that I'm making them feel good. But I would be able to go home, be by myself, and do what I wanted when I leave the home. Never would I go through the whole caregiving thing again. Never!
I agree with the others - you have been through the mill already, and you know how stressful and hard and sad it is to look after just your husband. To attempt to look after both your husband and sister could destroy your own health, physically and emotionally. I like Elizabeth's idea of having your sister's family and the social worker put together a plan without you.
First, I would not take payment - that would give me too much income and then would loose my Medicaid insurance. Second, If I don't then placement is what they say the option would be. As for that, from what they describe it may be only a matter of months before placement. But then again, she is alone all the time except for my brother who is gone 14 hours a day for work. Rhonda did say she perks up when they visit - duh. Why weren't they doing it all these years instead of once every 3-6 months when they only live a half hour drive away? So, she might improve some when more people to interact with, at least for a while. And, Art and her have always got along great. Even funny now when they get into their conversations with both forgetting what they just said and repeating!
I guess I think of my brother more than her. I basically raised him being the older one. We have a special bond even with the jerk he has been to me. He has fried his brain a lot on drug use over the years, so it is hard to have conversations with him. For a lot of years we were estranged. It took a lot of years to get him to believe I could still love him even though I didn't approve of his lifestyle. He has basically given up the last 6 -7 years of his life to be there with his big sister (23 year age difference). He doesn't want her to end up like mom did - alone in a nursing home. At the time he had no way to go visit her. Doesn't help that sister looks just like mom either.
So my heart is torn. Once she is placed not sure what he will do. He has always said that he would go before any of his siblings cause he couldn't bear another loss after his partner and mom. I guess one could say my brother is more important than my husband to me.
Thanks for all the advice and I am including them in my thinking.
I decided to wait until next weekend to go taking the stress off of packing to go today. I also told Rhonda I wanted to meet with her and her husband to find exactly what their plans for my sister in the short and long term and their expectations if I move over. So I will work on the pros and cons this week and go on Friday.
I've been thinking about this, and based on some of the other things you've said, Charlotte, maybe if they put together a sensible plan of care, you and Art could move over there just to be moral supports and be part of the socialization...everybody helping everybody get through it. And you could always help out as emergency back-up if the aide had a heart attack on her way up the drive, or something dire like that. (Joking...but it happens.)
Was an interesting weekend. We arrived on Thursday and she was up. Was knocking on the door and as she was coming said 'it must be family'. Watched 'Law and Order, SVU" until wrestling came on. Had no idea she liked it because we don't. Unfortunately had no MH to escape to! Besides being too violent for us , watching that can often make people more aggressive (like it did Dad), even more apt to when they have dementia. We slept on the hide-a-bed that night and should have known better cause it was not comfy for me. We brought pillows but Ric never said we needed to bring blankets. I have no idea where all the blankets she use to have are, but we couldn't find them. Ended up using Miche's sleeping bag.
Friday she was out by 10:30am and went to bed at 9:30pm. Her and Art spent almost the whole time bantering back and forth. I was exhausted just listening! Since he forgets within minutes, often seconds, when she got nasty or insulting he quickly forgot it. She would occasionally use profanity which bothers me but when she started making sexual comments I definitely did not like it. It was nice when she went to bed cause I finally got a break from their bantering back and forth - good for them but not enjoyable for me. At first they were funny but that wears out soon. And when she would say cruel things it effected me even though not Art.
Friday she was out by 10:30am and went to bed at 9:30pm. Her and Art spent almost the whole time bantering back and forth. I was exhausted just listening! Since he forgets within minutes, often seconds, when she got nasty or insulting he quickly forgot it. She would occasionally use profanity which bothers me but when she started making sexual comments I definitely did not like it. It was nice when she went to bed cause I finally got a break from their bantering back and forth - good for them but not enjoyable for me. At first they were funny but that wears out soon. And when she would say cruel things it effected me even though not Art.
Her time frame - as the day wore on time went back. She kept talking about her grandparent Consa's farm up on the hill. How she had not seen them in a while and needed to go see them. Her grandfather Consa died in 1980 and grandmother 1970. I showed her pictures of Dax with his new VW Beetle and in his tux and pictures of his trip to the Boy Scout jamboree in Japan. She enjoyed seeing them but I could see the puzzled look on her face of how grown up he was. At times she said she did not like the house, didn't know whose it was. Silly me said it was her's which got her all upset. Later she would say it was a nice house but too quiet- needed more people living there.
Friday night we slept on Miche's mattress which was much more comfy. Ric failed to tell him we were sleeping on it so when he showed up Saturday, he was surprised. He was fine with sleeping on the couch though.
Rhonda said Della wasn't eating but you could fool me. Friday morning we went to Winco to buy cinnamon raisin bagels for breakfast. I also had some apples I had cut up to snack on while driving, and brought the bananas so they would not go bad. Well, she saw the apples - started eating them. Same with the bananas. When we saw the cinnamon bagels she lit up - out came the mayo! I don't think she stopped eating all day. It was either that stuff or the leftover pizza! So she has a healthy appetite just goes more for 'finger' foods vs have to warm up or prepare food. Again, that is very common for dementia patients.
Rhonda and Sheldon came over Saturday as I requested. I wanted to know their expectations if I move over and their short/long term goals for Della. Because we were not expecting Della to be up, it was awkward trying to talk. We ended up with her there. We tried to talk quietly but she piped up and said something like 'are you guys talking about how you are going to put me away?"Their goal is to keep Della in the house as long as possible and without having to spend her savings. Of course trying to explain that to her was useless and she got quite angry/nasty for a while, then she calmed down. Dumb me forgot you can't reason with someone with dementia because their reason button is broken! Sheldon is learning that.
Good day for them to come because the denial for home care came in the mail. Even though the social worked OK'd her for 37 hours a month, she refused to co-operate for the assessment. My understanding (may be wrong) until she does, they won't approve the funding for it.
Their expectation for me moving there is when Della is confused or wants to leave with Ric in the morning he can call me to deal with her and not have to stay home and miss work. I don't do well with her anger. If she was fighting to leave the house I honestly don't know if I could deal with her. I am so glad Art does not get aggressive or angry and possibly violent (not yet anyway but his sister and dad weren't so hoping he won't). They are the opposites in this area. Della is a lot like mom even before mom got dementia - although they say it can start 20 years before symptoms show up, so who knows. More than once I was the receiving end of her anger even as an adult. I remember times when Della was there, and times she wasn't there, at the house in Bend mom would get angry at me for something - usually something to do with my parenting the kids - and Della would join her and almost edge her on until mom would slap me then we both were swinging. I had almost forgotten those times until now and is probably why Della scares me so much. Her angry outburst triggers memories/flashbacks of dad beating me and the battles with mom later. RED FLAG!
Once I told Ric their thinking he changed his attitude some. We did have a good talk (which you both know is not easy with little brother). He does have plans for when he has to move out (if he is financially ready I don't know). He said if I was there he could stand it a little longer, even stand having another sister in his every day life!!! Before we left he asked what tree branches would have to be cut to get the MH in. When we go back in 2 weeks (Art has a doctor appointment the 22nd), I will have to check the washout line where we would drain our tanks to make sure it is still good. With the way the Arborvitae roots grow into here septic, who knows if they are into that line. Also, with us there Ric could go out and do things without worrying about Della.
Rhonda did share she doesn't know how it would work if Della moved in with them because Sheldon is drinking heavily again. I know in the past Della would call Jack and have him deal with Sheldon. No Jack now to call.
Yesterday Ric, Art, Miche, and I were in the kitchen area and Della came out. After a while she walked out the door and down the driveway. Ric said she never goes beyond but yesterday she did. Art went after her (they do seem to relate good and always have) but didn't come back so I went. And since Art was out of his normal environment and was confused all weekend, I didn't know how far away he would get and not remember how to get back. They were down the hill turning up LaVonda's driveway. I don't know if Art directed her up there or she was going to go that way cause he couldn't remember. She was shaky walking and using a rotten piece of bamboo which would of done nothing to help if she started to fall. Ric brought the walker down through the field but she refused to use it. She walked up to LaVonda's house looking around. LaVonda came out and was saying 'this is private property, you can't be here' where Della promptly said 'yes I can, I am your neighbor!" She finally recognized Della when she got closer to her. It reminded me of the time we were riding in the van with mom and she pulled out in front of someone. Her reply was 'when someone sees an old lady driving they know to slow down!'
She walked back down the drive then cut up the hill. I was surprised she made it. Then when she got to the sandbox under the apple tree by the house that was filled with water, she reached down, picked it up to empty. I was shocked she had the strength and balance. Rick thinks maybe she left cause there was too much noise and confusion. Instead of retreating to her room she went outside. I am sure she did enjoy the walk and the sunshine. She probably needs to do it more. But, this shows she is a flight risk. She knew it was LaVonda's house (not her name though) but she didn't recognize her house.
I texted Rhonda about it telling her it was time to get an ID bracelet for her. Art and I both wear Medic Alert. It has the number to call to get info on us - both who our POA's are, that he has dementia and I am a caregiver to someone memory impaired. Whether she is a real flight risk I don't know. Art's dad and sister could be out the door and gone before you could catch up. So far because Art knows that is my greatest fear he won't go out without telling me exactly where he plans to go. For now that works but he does get distracted.
How did Art do? He was confused a lot of the time. He was obsessed with where his shoes were. If he had had his slippers to wear I don't think it would have been as bad. He is not one to run around in just socks. Didn't help that last week, without thinking I threw his old white sneakers away and brought out the new ones which meant he kept looking for white ones. I would tell him they are blue and orange - he would be looking right at them and not recognize. He is getting to that stage where he can be looking at something and not see it. The first time he needed to use the bathroom he went knocking on Ric's door even though the door was open to the bathroom that he walked by.
My dilemma is here we have a 'family'. People that know about him will keep an eye on him. If they saw him leaving the park they said they would let the office or me know. Of course, there is always the chance he won't be seen, but at least we are not isolated like we would be at Della's. When the sun comes out, the people come up so when walking there are people to chat with. You both know Art is a social person. I also have people I stop and chat with. I have my doctor here, this is the place I have worked on making it feel like home. At Della's we would be isolated even though we don't have to be there 24/7. Financially it would save us money because we wouldn't be paying except for propane (that needs to be verified with Sheldon). I would still have my computer to escape to! The VA is better, has more services and is closer than here. In an emergency we have to go to Spokane for the VA to pay.
Sunday Kathy took us out to lunch which we really enjoyed. Went back to her house where Angela and the girls came over. Art had a ball playing with the little ones. Kathy and I were talking about Della and the situation. She said Marq doesn't get involved because Della is her children's responsibility. Then I was chatting with the lady we have gotten to know at Taco Bell. She told me she there are three girls in her family. Her middle sister told her 'if something happens to the other sister, it is her children's responsibilty', not the siblings. So what do you do if their children won't? Or is asking me to move back there without financial cost them arranging care for her? It is like paying a caregiver without the actual cost. But, if it comes to trying to get her to do things like bath, change clothes, her bedding, etc. - I don't know if I could handle challenging her. And what about being there for little brother? He has given 6 years for Della. I know he deserves to have a life. He is way past due.
So I will keep writing because doing this email helped me see a lot. I was talking with 'P" who use to live in the park, left and now lives in another park a few miles away. She told me 'I have a big heart and will help anyone, but I often do it at a cost to me or without thinking of the cost to me. Also, I talk of can't wait until Art is placed and/or gone so I can have a life - and now I am talking of getting more tied down?"
Financially it would be a good move and for Art's VA medical care. But then until I need it I don't know how good his PA here really is. He says he has treated dementia patients before, but who knows.
I also encouraged them to find a new doctor for her. The one she has graduated from medical school in 2009, is 49 years old, was a teacher before, and my bro also has him as primary. 3 years ago he told bro he did not want to treat and deal with our sister. Told them they need to find one experienced with dementia and/or a geriatric doctor who is.
Please keep writing, Charlotte - if it helps clarify things in your mind, that is very important for you. It also helps us to understand. My personal feeling from reading, so far, is that you have SO much on your plate already, that I don't know how you can cope with the additional stress. You have a generous, giving heart, and I can understand that you love your sister (I've had two good ones), but there has to be a way for YOU to survive.
Yes, keep writing it down, Charlotte. It helps us understand, but more importantly, I think it clarifies the issues for you. I can see why you are torn, but you have an awfully lot to deal with right where you are...much less taking on all the issues that are going on at the other place. I know they are family, and it is hard to say no (as I know very well from personal experience)...and you are a loving and giving person--clearly you would be an asset over there for them. But again, you have a full plate right where you are now. And you know, you can't save everybody. Maybe you can help your brother and be a support to your sister just by visiting more often and being a social support to them, rather than an actual Alzheimers caregiver over there. You have to put yourself and Art first. There is a saying: "Don't set yourself on fire by trying to warm somebody else." I think it may apply to your situation.
I'm trying to follow this, but I think I must be missing something. I don't seem to be able to connect everything! I think it's probably my own state of mind, but I will go back to the beginning & read again. One question Charlotte - where is your sister located?
Elizabeth, I like that quote about not setting yourself on fire trying to warm somebody else. That's a keeper.
Dear Charlotte, your family makes it sound as if or you would only be caring for Della on mornings when she is confused and wants to go with Ric when he leaves for work. But reading your description of Della's behavior, I question whether you would end up taking care of Della all day every day. Anyhow, Della is only going to get worse. You would end up being the constant caregiver for two dementia patients.
You have repeatedly expressed to us your goal as far as your care of your husband. As your friend "P" said: "You talk of not being able to wait until Art is placed and/or gone so you can have a life." Your family has different goals. Rhonda and Sheldon want to keep Della in the house as long as possible and without having to spend her savings. Ric wants to be able to leave Della at home so he can go to work. They want you to help them achieve their goals but you can't do that without giving up your own goal of having a life. I sympathize with your wish to help Ric but just because you want to help does not mean you have to give help in the specific form that he requests. Maybe you could help Ric in some other way - by helping him to reapply for home care services, or to find a day care facility for Della, or to use Della's savings to hire a private aide to come in every morning while he leaves for work.
Charlotte, Nearly my entire life has been involved with caring for folks with dementia. And now, i'm taking care of my partner. From my own experience I see dozens of scenarios like the one you described of Della and Art taking off down the road together. That was hard enough for you, and they were together and you had others present at that time to help.
But what happens when one absolutely needs your help in the bathroom right now, and the other is out the door and turning left instead of right and you won't know which intersection he/she took, or if they left the road altogether. And so much can go wrong in the bathroom in an instant. You really can't leave, and you really can't stay.
There are many of us who seem to have caregiver emblazoned on our forehead. But we have a right to a bit of life, I think.
My heart goes out to you. And I wish there were happy endings for everyone. And I think Mildred has a point. Della's savings could really be used for Della. Why not? Take care of you, Charlotte.
I agree about the savings but she is the type she would fight anyone in her home. If the right person they might be able to break that stubborn streak in her. My bro leaves for work at 6 am and doesn't get home until 7:30pm (relies on buses).
Mim - she lives 250 miles from where I am now. We would park right there at the house, so would be next door so to speak. The reason I don't drive over there often is the miles they put on my car. It is a 2001 with 134,000 miles and hope it makes it to 200,000+.
Lindylou - you are right in if one took off -- who would I choose. Good food to ponder on! My brother said if he came home and found her missing he would not report it for a couple days. And then hope when they found her she would be dead. I have to agree because that is what she talked about but not like our mom. Our mom said if she ever started forgetting like her mom did, she would kill herself. Problem: she forgot!! Evidently my bro had never heard me say that and thought it was funny. I only hope if I start forgetting I will not forget I want to end it sooner rather than later.
When I take the dog out for a walk, I ponder on it all: do I want to leave here, do I want to move to the rainy side of the state, do I want the added stress? Ironic as it is, I have been pondering since last year moving back there but in an RV park. A girl I have known since diaper days lives on the Oregon coast - about a 2 hour drive from there. I would really like to reconnect other than via phone - but again it would mean leaving the sunnier side of the state.
I have an appointment with physical therapy the 19th. I have had a problem with my left arm and leg. Doctor said something about a hip ligament tightening up. It started after my surgery almost 2 years ago so think it really is related to when they were positioning me. My arm has been hurting for 4-5 years. It acts like a pinched nerve but it could be ligament too -definitely not muscle pain. I also told them I would not move over before the end of May.
Regardless, I will see how she is the 20th when we drive over for Art's appointment the 22 at the VA.
Keeping adding comments because they are helpful in deciding and helping me to see I can't feel guilty if I don't move.
Sad thing is: if it were me needing help, I doubt any of my siblings would offer to help, put their life on hold for me. My younger sister might help but would not put her life on hold. Della is the only one I think who would but of course is unable now. I am different in that respect.
I keep wondering what you would do if Art started walking in one direction and Della in another. Seems a huge responsibility, especially since both will get worse and require more attention over time.
Yes Charlotte, run!! They will chew you up and spit you out (when it is over.) We all love you on this board and would hate to see you taken advantage of in this way. Look out for you and Art, that is more than enough for any one person to cope with, day in and day out. XX
Charlotte, I have not been posting much here lately. Been in a funk of sorts, trying to find the best way to help my mom. But I have been following this thread. I just want to add my two cents worth. Please think this through. I know at face value it just seems like you would be helping from time to time. But as we all know it is a full time job 24/7 and it would be taking care of two people.
But as we all know it is not that simple. It will be like 2x2. Like others have said. Maybe not at first but at some point, you will be faced with being pulled in two different directions at once. And most likely this will happen more and more. Is there an exit plan if you do find yourself in over your head. What about if you are ill. Who steps in to help. Will they step in or just give lip service.
I know with my DH that one day he was doing good and then it was down hill fast. He was falling, knocking things over, I could not make the house safe enough fast enough. And he was just one person. I don't know what I would of done if it was two people.
What about doctors appointments, dentist appointments, shopping, baths, cleaning the house, cooking, now when your attention is on something else you have TWO other people getting into monkey business!!!! Also if and when your DH is placed, will you be able to leave to visit him? Your freedom will be greatly reduced.
Please be kind to yourself, and do think this out. If it were me I would have to say no.
Charlotte, NO GUILT! You are devoting your life to caring for Art and are to be applauded for that! You cannot save the world. If this were an easy fix, you know we all would support you going to help in a heartbeat. Once you stop giving your family a possible "out" by enlisting you, they will move on and find a different solution. "Let's see if Charlotte would do this." "Can't hurt to ask." "She's an adult and can say 'no'". You are not their only way out, whether you think that is true or not at this time! As to your long time friend, she would still be 2 hours away. You would probably still communicate by phone or Skype or email. Don't let yourself be guilted (even by yourself!) into something that really doesn't sound good in the long term. How resentful would you be if once you are there, everyone else feels free to leave? You are sure they wouldn't do that, but what if? I ditto Cassie's post.
This would be a good time to use Mary's line, "I'm just not up to it." You could preface it with all the reasons you would love to do more, but then say, "I'm just not up to it." There isn't anything they can really say to that, other than to keep manipulating...l agree with what Cassie, Myrtle, LindyLou, Paul, Blue, and Carol all said. You are good-hearted, Charlotte, and your loyalty to your family is commendable. But you and Art must come first. First you...secondarily, Art. You are already in one of the most difficult situations life can throw at you, and it sounds like your family wants your help but that it's not going to be reciprocal in terms of them doing anything for you. And I can certainly see their expectations escalating for what you are going to do for them. I am worried about you. I know this is a tough one, but it just sounds so bad for you.
Charlotte, You said that our comments might help you to see that you shouldn't feel guilty if you don't move. Here are some thoughts.
You talked about "putting your life on hold" for siblings. IMO, when you are in your sixties and you make a commitment like this, you are NOT "putting your life on hold." You are GIVING UP part of your life. At least that is my experience. You walk into a tunnel and when you walk out, all those years have gone. Vanished. I went into this as a young 59 and now I feel like an old woman. Tomorrow I will be meeting three friends for lunch. One is my age, one is three years older than I am, and one is nine years older, but compared to me they are youthful. And why shouldn't they be? Tai Chi, Pilates, yoga, travel, book groups, brunches, lectures, museums, movies, writing . . . They are taking care of themselves, not someone else.
The other point is to beware of false choices. You are not dealing with two completely opposite alternatives, e.g., being cared for at home by Charlotte vs. being tortured in an institution. I question whether keeping someone at home for as long as possible is the best option in all cases. Does the benefit the patient gets by living at home justify what the experience takes out of the caregiver? The idea seems to be that the patient's life is valuable and our lives are not worth much. Also, other options should not be dismissed too quickly. This board is full of people who said their spouses would never agree to go to day care or to have a helper in the house and then it turns out they go to day care or are helped by an aide in the house.
My mother died at age 98 with all her marbles. All my sisters pitched in but even so, keeping her up and running during that last decade was hard on all of us (especially the sister who she lived with). There is absolutely no way I would ever ask my sisters to care for me if I become disabled. We have done enough and are entitled to live our own lives. And so are you.
Incredible wisdom there, Myrtle. I actually printed your post and changed it here and there with a pencil to make it more relevant to my own life. (Sorry, don't mean to hijack Charlotte's thread.) That one is a keeper.
The other night I got a wake up call so to speak. So for now my decision is no. We will be there this weekend cause Art has his doctor appt Monday, but I really don't expect anything to change - except fighting guilt feelings.
Growing up I idolized this sister. I thought she could do no wrong and had the perfect marriage. Around 1974 she suddenly announced that she was divorcing her husband. Later we found out there was a new man in her life. I was having a hard time with the divorce as was her oldest son 'J' that was 3 years younger than me. When she took this guy with her which was when we found out about him, it devastated me and 'J'. I made attempts over the years at to rebuild our relationship but she never seemed willing. About 2000 I found she was living in Vancouver with this guy whom I never heard of, from a cousin. I asked where she lived cause I wanted to see her and try one last time. My cousin actually called my sister to get permission to tell me where she was. It was so weird like I had the plague.
This all came back to me when I was trying to figure out the drive behind helping with her. Art and I always ended back there because I was trying to win her love back. She never had problems with Art -adores him, but it was me. In fact, all my siblings have had trouble with me cause my thinking was so different from theirs. I love my sister and I love my brother, but I need to stop trying to win them over to accepting me as I am cause it will never happen. I was also estranged from my younger brother because no one believed I could disagree with his lifestyle and still love him. That has been mended thankfully.
I did ask my nephew about if I would be expected to help with showering and toileting if needed and the way I read the reply was 'yes'. When I couldn't do it anymore because of Art or whatever reason, they would look into other options. Well, I am not willing to help her toileting and/or showering. That ends that.
Time for this lady to finally be selfish. If they can't/won't accept me the way I am then too bad.
Forgot to add another factor in my decision: I watched my grandmother, mother, FIL, and SIL die from this disease. My MIL died from a heart attack trying to do it by herself. Now I am watching my husband, sister and brother. I don't want to watch two together dying from this.
Charlotte I am so happy to hear your decision not to move. It's so difficult to care for one dementia person but two? I was very concerned for you and your health and well being in general. You did a great job of assessing the situation and came to your own logical conclusion. Take good care of you and Art.
Charlotte, you are not being selfish. You are taking care of yourself and that is totally different. Each of us has to find our own way in the world, and we are not to be faulted for doing so. Quit being so hard on yourself. You are a good person. Whenever those guilt feelings sneak up on you, sing "la-la-la" and turn to positive thoughts immediately.
Charlotte, seems like you listened to lots of advice, giving you other perspectives on your situation, thought it through and have arrived at the best decision for you and Art. Maybe you should write down WHY you arrived at the decision you did, just in case you get weak and want to rethink your decision.
Wow what a verification this weekend was for my decision. Saturday night due to circumstances, we got the hideabed to sleep on again. My sister was still up when we went to pull it off to put it on the floor. She flat out and said no we were not, it was comfortable the way it was. Words were said, I was in tears then my younger sister intervened and got her to see what we wanted to do. Sunday night I was waiting until she went to bed - should have been by 10 since she was up early - not! We pulled it out, Art layed down and fell asleep by the time she went to bed at midnight. I was woke up at 5 when my brother got up to go to work. So I was really tired last night but felt heavenly to be in my own bed!
Sunday evening we were sitting in the livingroom just my sister, Art and me about 10pm. She said to hb: you look tired (he was in the recliner). I was laying on the couch. Then she says 'go spread her legs and that will put you to sleep!". I wanted to wash her mouth out. Fortunately hb had no idea what she was meaning. My husband has rarely gone to anything sexual thank goodness. Then she tried to get him to start swearing. He wouldn't and I told her we don't swear in our household. She says: you are not in your house but mine. Me: we still abide by our house rules. She kept trying until she finally gave up getting him to swear. (Swearing was not something she did in her 'healthy' life).
We also spent time going through our daughters totes that have been stored in the shed for the last 10 years (she is in TN). Had no idea she had so many there. We made it through 8 - brought home 3 big bags of garbage, took a box and big tote of stuff to Goodwill leaving 2 totes with stuff. Still have 6 to go through another time. Was mentioning it to dementia sister, who is the one that conspired with daughter to sneak away which caused problems between us. Was big mistake cause then she told me to let her move in with us. Told sister that is not possible cause we live in a motorhome. Her reply: what a horrible parent you are, why did you have kids if you didn't want them living with you? I told her that is one of the reasons we moved into the motorhome so they would stop bouncing back. I worked hard to let that slide by. We tried to get her to take a shower Sunday but no luck - she smelled bad. When she was getting up noticed her back was red - didn't know if it was from the chair. Did notice the place where her skin overlapped was red. When I let my niece-in-law know my decision last night I let her know about it. As we left, my brother's friend who has stayed there off and on and gets along with said sister, I asked him to try and get her to shower. Guess he has had luck by bribing her!
So it gave a good taste of what life would be like there although I would have my MH to escape to. My younger brother was disappointed - didn't realize how much he was looking forward to having someone else there. My younger sister understood once I told her about all my reasons based on history with the older sister.
the trip home was long of course. Art was confused where we were going. When I said home he thought the motorhome was parked at my sister's. We were blessed with a beautiful rainbow coming home. We hit a squall and the rainbow was an arch of us - we could see both ends but no pot of gold! And then to watch that bright full moon coming up over the hills in front of us - gorgeous!
Forgot to tell you about something funny. On Saturday my brother that is a year older than me came over. For some reason the rest of us left to do something leaving him, hb and sister together. When we got back I asked him if he enjoyed his visit.
His reply: you got to be kidding! They changed subjects so fast I couldn't keep up! I laughed and said: welcome to my world!