Hey! Where has everyone been lately? Charlotte...it's March. You are supposed to head up this new thread and lead us all into Spring. Yea...I am so ready to say good-bye to 'ole man Winter! We have had some days in the 60's and even one in the 70's! That motivates me. My birthday is on the 13th and the best gift ever is getting that extra hour of daylight back!!! I need that sunshine therapy to help maintain what little sanity I still have. I honestly don't know how you Canadians do it with all that cold weather!
I've been chilly all day. Going in and out with Bandit all day long--starting at 6:30 am and ending at 11 pm is pleasant--I love the fresh air and exercise--but I get chilled, down coat or not. I actually had a hot whiskey and lemon tonight after supper, which I usually only drink when I'm fighting off a cold. I only put a little whiskey in for the flavor--not a full shot--but it was yummy and very cosy to drink by the fire with Bandit curled up on the sofa beside me. I have been watching the planet Jupiter in the East--it is going to be very bright in March--can't see it tonight for the clouds, but it has really been stunning and will only get better, with the best night being March 8 if it is clear. It is in opposition with the sun this month, which means it will be very showy. (I just read up on it on earthsky.org)
Yes where is everyone? I sometimes wonder if when Sid passed, if the site passed as well. It has been really quiet since then. I think that quite a few of the originals have lost their partners and have moved on as it should be. Everything evolves and changes happen. I am finding that I don't have as much to talk about except his bad behaviour and that is getting less and less lately. Geriatric Phyc team are coming in soon so that should help.
Well, groups are going to move around and change as time goes by...that was what I was taught in school about "group therapy", which is what this site is, to some extent. I think the message boards will probably wax and wane as people come and go...but it would be a disaster if this site were not here. Just the wealth of practical information is so helpful...Joan's blogs going back in the blog archives were a godsend to me. If anybody knew about Alzheimers and how to deal with it in facilities and at home it would have been me...but this site offered (and still does) so much that I never learned from nursing school or my years in hospital work and home care. I've seen other widow/widowers sites, but nothing that understands , in dealing with the aftermath, what Alzheimers has done to us. I can't remember exactly when I found this site and started to post, but I know I was recommending it to people back in 2012 when I was still in the workforce, so it's been a good three or four years for me. It has truly been my lifeline, both when I was caring for him and after he died... and through the tumultuous life changes of leaving the job, moving out of state, and then being hit with huge family changes on top of the Alzheimers experience. Joan may not be up to the work that the site entails for her, but I hope it will keep going. Maybe at the end of the day, some of us can hook up on our own, like Mim and I do, but some of us are very distant geographically. I'm wondering about the finances, too. I don't know what it costs Joan to run the site. Maybe if we had some idea, it would be easier to know how much money it would be helpful to contribute, for those able and willing to do so.
I came on this site recently when I very badly needed to talk with people who knew what I was going through. I remember lying on the bathroom floor yelling and banging my fists on the floor crying out that life is not fair. Not fair at all. My partner and I were just entering her stage 6 together. I’ve logged on some, feeling my way, and was working my way back through the forums and message boards, but felt like I was learning to know people backwards. So now I check what’s current, and then start at the beginning, read a month of forum, and then the same month of message board. People have become my friends now, who have left this site long ago. But I have learned important things, empathized with those who had it way worse than I do. And laughed and cried.
I don’t know if Joan wants to keep this site going. I’m sure I might want to leave AD behind when it has spit my partner and me out. But AD spouses are always entering this very strange AD world and will need this site, need the forums, and need for the new people, like me, to start to come forward on the message boards. I thank God and the universe that it is here for me now.
I certainly cannot speak for Joan but I do know that she has a heart for this. This site has been such a lifeline for so many in the midst of the greatest storm of our lives. Those of us who have had our loved ones pass on are changed in ways that we never could have imagined. But the cord that binds us all together is still there as a constant reminder. those of you still in the throws of it all are being squeezed and suffocated by it. We on the "other side" still see the cord everywhere we look and are constantly trying to step over it as we move on. But, at times, we are still tripping on it as it rears it's ugly head at the most unexpected times. We all still have that common thread. Sadly...it never goes away.
I have lots to say but I don't post it all because I don't want to hog the board and because eventually I get in trouble. I think there are three reasons for this. One, I am a grouch. Two, I like to bat ideas around without thinking about how my comments might be taken amiss. Three, due to its composition, this site is oriented towards women's styles of communication, and my style of communicating is more direct and less polite. I don't think I would get into trouble if I were a man. (See, I just did it again! I just can't stop myself!!!)
I don't think that the fact that Joan has been lying low has too much to do with the light traffic on the site. I think it's because we need more new members. If this site shut down, I think I would shut down, too. There is NO ONE who understands what I am going through as well as you guys do. IMO, the psychology profession should establish a specialty for people who can counsel ALZ spouses because no one understands us.
Well, dear Myrtle, I always look for your comments. I find them honest and illuminating. Nor do I think you are a grouch, just calling it as it is. So post on. You are an asset for all of us.
On a lighter subject, March here in Mass. came in like a lion. A lot of high winds earlier this week and this morning, light snow. I am starved for light.
Speaking of lions, what do you think of giving a house cat a "lion cut"? My long-haired cat, Lucy, still resists being groomed by me and whenever I have the groomer remove her undercoat, she grows a new one. I took cassie's advice and bought a soft rubber brush but she won't tolerate that, either. I just looked at some pictures of cats with lion cuts but I think she might be humiliated by it.
I'd never heard of "lion cuts" before, so I googled it. I guess it depends on how much a problem the long hair presents. (I'd do it because of my allergies and chronic sinusitis.) Cats always seem so supremely self-confident to me that I think they would take it as in their stride.
Here in southeastern PA March came in like a lamb, about 60 degrees on the 1st, but since then has been cold and windy. Then last night an inch of snow. I'm ready for spring.
I don't post much anymore because I don't have much to say and am not really good with words. I often don't know how to express what I do want to say.
Regarding Elizabeth's earlier post: I too think it would be useful to know what it costs monthly, on average, to run this site. As Elizabeth said, those of us who are able would have a better idea of how much to donate.
Myrtle - I never see any of your post as something to get in trouble for. People are always going to say things in ways that might upset, offend or make someone face their own thoughts/feelings. Nothing wrong with that. When said so you are talking about your experiences then no one should take offence.
Aunt B - didn't even think about starting a new thread for March. I had posted some things last month the no one responded to, so didn't feel like posting anymore. Most of it there was nothing really to say - just acknowledgment that it was read. That is where a 'like' button would be so helpful. IMO
I have been busy. Tuesday I took my friend to get her first colonoscopy. I thought I was great making it to 62 without having one - she made it to 64! Her new male friend pushed her to get it. Good for him cause she had some large polyps. We have been busy working outside. Last week it was moving the MH back and leveling it which was a nightmare. Another day working on the flowerbed around our little tree. Yesterday finally worked on putting legs on our deck. We have a deck that we have toted around for years - fits in the backseat of the car - that has been sitting on concrete blocks. Every time we want to get into either of the bays by the door, it has to be moved. My best laid plans did not work out so well. We got the frame put together to set the deck on by it is not as sturdy as I wanted, so will have to work some more on it. My mind was so tired yesterday after trying to explain to him what and how we were going to do it.
Yesterday morning I had a meeting with my Aging and Longterm Care manager. She did another assessment when some of the questions asked helped me see how everyday things I was doing for him - like reminding of showers, taking his meds, and all the food choices and shopping are my deciding. I came home Tuesday with the TV on channel 4 instead of 3, so he was sitting in silence. Yesterday I left the TV on the channel we usually watch (MeTV) but when I came home he had for some odd reason tried to change it so the TV was on 4 again. His problem is to change the cable channel you have to push the cable button on the remote which he forgets he has to do. In all honesty, he never has been able to figure out remotes even all the years we had DISH.
Today is laundry day but I did sleep in which felt good.
Charlotte, I know what you mean. One time the Dr ask me what he was still able to do on his own. All I could think of ,at the time, was that he could still walk WITH assistance and he was still feeding himself. I can still remember the light bulb moment that I had when I realized I was doing everything else for him without really realizing it. You just do what needs to be done w/o really thinking much of it until you are forced to admit it. It was heartbreaking to realize the reality we were living in that moment.
Myrtle, I don't recall ever seeing a post from you that upset me. If I ever said something to upset you I'm sorry. Please post : )
Charlotte, I understand I have posted before and have no one respond. Nature of the list I guess. We often agree with what someone says but maybe have nothing to add.
I don't post often, but read almost every day.
I am busy cleaning out the flower beds and putting down mulch. Getting ready for spring. My weeds are starting to come up!
Yes, Myrtle your cat would be humiliated and would never forgive you for such an affront to her dignity!! And it is always good to read your posts, I really like your style.
I decided to take cassie's advice. It would break my heart if my cat felt humiliated. Dignity is so important to cats. Lucy has calmed down a lot but she is still very nervous. She seems to have a very strong instinct that she is prey. I already have a plug-in product called Feliway, which has a pheromone scent in it that is supposed to calm cats down, but I just realized I have not tried the most obvious thing, which is catnip.
Charlotte and blue*, I know what you mean about not adding comments that don't say much. A lot of times I really like someone's comment but have nothing to add and I don't want to post a short comment because it might draw attention away from the main comment.
MaryinPA, Your previous posts told me a lot of interesting things. Without even looking them up, I remember that you and your husband raised a son who is disabled, that your husband was a college prof., that he liked to take cruises, that you cared for him at home, and that he was a good man. I think you also had lunch with some of our Florida members when you visited there after his death. I never noticed that you had a problems expressing what you wanted to say. (Maybe you and I are both too self-conscious!)
As far as the website goes, I agree that it might be helpful to know what the costs are, so a budget for donations could be established. Of course, donations would not be necessary but those who want to give would have some idea of whether their gifts are meeting the need and Joan would be spared having to make emergency requests.
myrtle, I'm impressed that you can remember all those details.
I was hoping that I might get to Florida again this winter but decided not to go because I spent so much money on the 50 day cruise I did in November and December. Then my granddaughter got married in Boston on Valentines weekend and guess who paid the transportation, hotel and all the eating out for 4 days. At least I didn't pay for the wedding and reception.
I'm saving my money for my next big cruise in June. That will be 20 days from Amsterdam to the top of Norway and back. I'm going with another widow I met on an Alaska cruise last summer. It should be an interesting trip.
Myrtle, I don't recall you ever posting anything that was inappropriate or too opinionated or whatever. Please just speak your mind.
Charlotte, I read everything you post with a good deal of interest. Please don't stop posting. It is very interesting to me to read about how you manage the MH and your park site, and also about the weather and all that where you live. You are at the opposite end of the country from me, and it is interesting to hear about it.
I try not to fill up the comments sections with a lot of blab and chit-chat, which I know I tend to do. I try to post things that I think might be helpful and supportive to others, if I can. So sometimes I'm not commenting because I don't really have anything useful to add, but I do want you all to know that I read every single post every single day. I go to Joan's first thing in the morning when I'm checking the weather and the headlines online...so I may not be giving a shout-out, but I am here.
Here's another depressing article about someone's life being taken over by caregiving. If the link doesn't work, just go to the New York Times website, go to the Health section, and you'll see the article at the top.
Another sad story. And as Charlotte said, to give a 5-7 year timeline is wrong. The figure I was given in my trainings was 8 years. Also wrong. I think there is so much variation in the timeline that families should be told that--to just be ready for anything up to 14 or 15 years..and then hope it won't be that long. There are other factors, too, of course. The person's age, other health conditions, etc.
Hi there! I'm still around....haven't been commenting very much, just a couple of small things. I read, but as others have said, I don't feel I have much to say. Myrtle, I appreciate a direct approach...it can be done in a non-offensive way, but on this site, I feel that if I'm overly honest & direct in what I say, people don't really know me well enough to understand. I will just add that Dan has had two times of an in-home aide coming in to help with hygiene issues...the first was kind of confusing, but it all worked out & he seemed to be thrilled - go figure. The second time, yesterday, was a different gal - quite young & didn't really take charge, as I figured out later. She would ask him if he wanted to do such & such &, of course, the answer was always no. I don't want to hurt her feelings, I think she really wanted to help but just didn't seem to know how. I'm going to have to call the agency on Monday to see what can be done. And no offense to those who smoke, but we don't & she was really overpowering with the smoke smell. It sure hasn't been a relaxing time for me, I must say. He has his first day of daycare this coming week & I realized I have an appointment with a gastroenterologist early that morning...since I'll be taking him at first, this is another problem to be solved, time wise. Things don't fall into place easily, do they?
Elizabeth, I forgot to add that we are long overdue! Give me a couple more Wednesdays, & maybe I can see my way clear to spend some time together....okey dokey?
I was going to say regarding the aide who didn't take charge the way she should have, that this is a common problem with younger, less-experienced aides. While none of the staff can "make" the patient do anything, there are ways to pleasantly and tactfully nudge the patient into letting the aide complete the tasks on the care plan. But, sometimes no matter how experienced the aide, it is just impossible to do the personal care on the first visit, and the patient has to know the aide a little better before allowing the help with the shower. The aide should call her office and report this, and probably will be instructed to just visit with the patient while doing tasks such as the laundry or light housekeeping...or making the patient a snack...things that are helpful but not so personal...so she and the patient can establish a rapport. The strong smell of cigarettes on the aide makes for a valid complaint on your part. Just imagine if Dan had respiratory issues or was allergic to cigarette smoke. Definitely report this, and make it clear that you cannot accept an aide who is reeking of cigarettes. Obviously the aide has every right to smoke if she wants to--not on your property, of course--but she may be a little less inclined to smoke so much if she finds it is impacting her ability to be assigned cases.
I think you'll find that the aides change a lot, and you'll have one after the other coming through like they're in a revolving door. Part of it is that you yourself may need to ask for aide changes if the ones they send you are problematical or just not a good fit for your home. As a public health nurse and later a supervisory RN and regional trainer, I've changed many an aide just because of a lack of rapport, not to mention all the larger issues that can pop up. This person is going to be in your home, and you and Dan must feel comfortable with her. Keep a good communication with their office, and don't let problems fester because you are afraid of the aide losing money, getting in trouble, or anything like that. Believe me, there are more than enough cases to go around, and then some. And there is no reason on God's green earth you have to work with a problematical aide. There are enough good ones out there who will be a good fit for you and Dan, and who may stay for awhile, but it's not uncommon to run through several aides before you find one who will work out well.
As they come through, just make sure you have a copy of the care plan so it is clear what the tasks are. Have Dan's clothing and toiletries well-organized and accessible so even brand-new people can get started quickly without needing a lot of explanation and hunting for things. Helping a demented patient with personal care is an extremely common task, and just about any aide should be able to manage it. If they can't, or don't...or if they're doing a half-way job...let their office know right away. I don't remember you talking about Dan's razor--I may have forgotten, if you did--but they will probably want to use an electric or rechargeable razor for his shave. (Nothing with a blade that could cut him.)
Mim, Thank you for letting us know how you are doing. I have been thinking about you and wondering how this new chapter in your experience has been going. Elizabeth gave you good advice. I found that although it was disruptive to have another person in the house, it was well worth it after the problems got ironed out. It takes a while to establish a good routine for aides. What worked best for us was having an experienced aide and having that same aide come every time. I suggest you tell the agency that this is what you want. That way, the aide can get an idea of what your husband is like and the two of them can establish their own relationship. Where we are, the VA has contracts with several different agencies. I was not satisfied with the aides who the first agency sent so I asked around about different agencies and then called the VA and asked that a different agency be assigned to provide aides for us. The VA had no problem with that.
This type of problem is why it is helpful to be part of a local support group - not for emotional support but for information about others' experiences with different agencies. You really cannot go through the Alzheimer's experience without the benefit of word-of-mouth advice or even just plain old gossip. Please let us know how the day care works.
Hi all, haven't posted in awhile so thought it was time for an update. I have been getting some respite time lately in fact currently away with my boys for a couple of days of skiing. Sounds like fun but I am worn out went yesterday but stayed in today just for some down time. Things have really progressed In last few weeks we are now fully entrenched in level six no need for details you know what that is like. I have been talking about the need for placement for awhile now and I know I am at the end I am not functioning as well as I should. The professionals, my doctor, the head nurse where Lisa is right now, our case worker all agree. In fact the nurse where Lisa is suggested in her opinion I should not take Lisa home. I asked her what are you basing this on, her comment her experience, observations of Lisa by the people working with her, her observations of me and her conversations with me.
Having said that there are no beds available and even though we are deemed urgent there are people ahead of us. The suggestion transition to the hospital then she will get placed. I am not comfortable with that.
Two other problems I am getting some push back from my sister in law. Lisa is still cognizant of where she is and home with me and with the dog is her happy place anything else she is anxious. Sil feels she has limited time left and we should keep her where she is happiest for as long as we Can I agree. Her Feeling i just need to get more help relieve some the pressure so I can get out and do some things. I do have minimal help now but the feeling is someone maybe everyday. I try to explain that any change Lisa is resistant to, she was very angry me taking her to respite and vows she will not have anybody in the house. My feeling I will be fighting this battle everyday even if it is someone, like our current help, who lisa really likes. She just doesn't like the change and having someone else telling her what she has to do. It is not the physical work it is the emotional toll. I feel this will be adding more stress for me rather that taking it away am I wrong in that? My sil feels you haven't tried it? She means well and wants the best and certainly do not want to get in a pissing match with her just want us to be on the same page.
The other issue where we are when you are offered a bed you do not get to choose the facility and there are some I am not confortable with so don't know what I will do of one of these comes up. You can transfer but there is a waiting period could take 6 months and by then who knows where we will be at.
So right now she will be coming home I will be getting more help and we will see how it works while we wait. When we get the call, could be tomorrow or could be months then it will be crunch time.
There is also private options but really have not found any in our area that look any better and ones I would consider have waiting lists.
Hi all, haven't posted in awhile so thought it was time for an update. I have been getting some respite time lately in fact currently away with my boys for a couple of days of skiing. Sounds like fun but I am worn out went yesterday but stayed in today just for some down time. Things have really progressed In last few weeks we are now fully entrenched in level six no need for details you know what that is like. I have been talking about the need for placement for awhile now and I know I am at the end I am not functioning as well as I should. The professionals, my doctor, the head nurse where Lisa is right now, our case worker all agree. In fact the nurse where Lisa is suggested in her opinion I should not take Lisa home. I asked her what are you basing this on, her comment her experience, observations of Lisa by the people working with her, her observations of me and her conversations with me.
Having said that there are no beds available and even though we are deemed urgent there are people ahead of us. The suggestion transition to the hospital then she will get placed. I am not comfortable with that.
Two other problems I am getting some push back from my sister in law. Lisa is still cognizant of where she is and home with me and with the dog is her happy place anything else she is anxious. Sil feels she has limited time left and we should keep her where she is happiest for as long as we Can I agree. Her Feeling i just need to get more help relieve some the pressure so I can get out and do some things. I do have minimal help now but the feeling is someone maybe everyday. I try to explain that any change Lisa is resistant to, she was very angry me taking her to respite and vows she will not have anybody in the house. My feeling I will be fighting this battle everyday even if it is someone, like our current help, who lisa really likes. She just doesn't like the change and having someone else telling her what she has to do. It is not the physical work it is the emotional toll. I feel this will be adding more stress for me rather that taking it away am I wrong in that? My sil feels you haven't tried it? She means well and wants the best and certainly do not want to get in a pissing match with her just want us to be on the same page.
The other issue where we are when you are offered a bed you do not get to choose the facility and there are some I am not confortable with so don't know what I will do of one of these comes up. You can transfer but there is a waiting period could take 6 months and by then who knows where we will be at.
So right now she will be coming home I will be getting more help and we will see how it works while we wait. When we get the call, could be tomorrow or could be months then it will be crunch time.
There is also private options but really have not found any in our area that look any better and ones I would consider have waiting lists.
I was a single parent when I met Lisa that was 25 years ago the boys(men) are now in mid 30's. So I was a package deal when we got together and They lived with us through the teenage years. Now One lives about 4 hours away and the other one on the other side of the continent in New York so we do not get together that often. It has been a long time, cannot even remember the last time it was just the three of us together.
Thanks Ron, I asked because I thought they might be young children and would be affected by your decision. It's great that you were able to get away with them on a ski trip and I hope you have more get-togethers with them in the near future.
I was once in the camp (along with your sil) that believed in keeping a dementia patient at home for as long as possible, but I no longer believe that should be the goal in all cases. A nurse friend who specializes in geriatric care believes that patients who are more aware of their surroundings when admitted to LTC have better adjustments since they can learn their way around, engage with others, etc. I do not know whether that is true or not but several members of this site also believe this.
It is my belief that the benefit (if any) that a patient gets by living at home longer often does not justify what the caregiving burden takes out of the well spouse. The fact that Lisa resists having a helper in the house makes your job even harder. The stress you experience with Lisa at home is not something that your sister-in-law really knows anything about. In fact, I question how much of a say she should have in any of this. If your doctor, and Lisa's head nurse and her case worker all think it's time, that should tell you something.
Thanks myrtle I hear what you are saying and I have heard it before. The argument about not waiting too long for care so better adjustment and your comment about benefit of home experience weighed against caregiver health. I recognize the signs in myself that I am over the edge. Hard when you Were always the person who dealt with crisis and felt you could handle just about anything.
Also understand who should be making these decisions, me, and the professionals know far more about it than my sil but would be great to have her support. Right now need to move forward with more help and just see what happens I hope I am wrong and this will work for awhile without us having a total melt down.
Ron, I do understand why you think dealing with Lisa's resistance to having an aide in the house must be harder for you than just caring for her yourself. You have my sympathy. Maybe others on this site who have dealt with this will have some suggestions.
Rona, that is one big problem with my sister who I temporarily considered moving to help my brother with letting her kids off the hook. My sister will be very resistant to any help coming in. I feel sorry for anyone who tries but sooner rather than later it will have to happen. If I had moved there, I would have lost my sanity within a month probably. No matter how strong we think we are or have been in the past, this caregiving shows us a side of us we often don't like.
I was laying in bed thinking about the request to move over to my sister's. I know part of the reasoning was so my nephews and niece could have a life while still young. Then it hit me: they are older than my younger brother and only 3-8 years younger than me. So not much of an age difference and they have had a long life without being tied down to a sick mother to care for.
One thing that sometimes helps is not to stress so much that the patient needs the help. Make it more about yourself. Say you yourself need to get somebody in because you "just can't do it" anymore.
If you make a big deal to the patient about how their deficits are increasing and they need more help, they can get very resistive. But if you put on a stressed, piteous face and say something like, "I really need this. I really need this help in the house." sometimes that works.
When I first got help in I told Ron she was here to help me. And she did help. The first couple weeks she helped me clean windows and "Swiffer" the floors. I didn't even go out the first week and the second time I only did a short errand. Then I started going for longer times. By then he was used to her being there and let her help him in the bathroom, make his lunch, etc.
By the time I had a second person another day of the week he was used to someone else being there and he accepted her easily. As he went downhill he allowed them to do any kind of personal care.
When an aide comes to the house, there should be something in it for the patient. What does your spouse like to do? My husband liked to go out in the car so I sent them out on errands together. Costco was his favorite destination, so they often ended up there. If the weather was good they would take a walk around the neighborhood and my husband would explain points of interest. It made him feel smart and important. Mim, do you think that approach would work with Dan? Also, the aide does not have to be introduced as a helper for the patient. Ron, is there any way Lisa would see an aide as one of her girlfriends? My husband thought the aides were his pals. I agree with MaryinPA that an aide's duties should be eased in gradually. The aides we had started by shaving my husband with an electric razor. After he was comfortable with that, they moved on to helping him brush his teeth. Ron, would Lisa let an aide style her hair or apply makeup? Not because she needs it but to get her used to the aide giving personal care.
All good suggestions thank you. I have had help one day a week now for about 6 months and we started it as them just meeting and becoming friends, taking her out shopping etc. all of the suggestions could have been a page out of our book doing hair cleaning together etc. works great. I am meeting her on Wednesday to go over how much more time I think I need and how much she can give me. Maybe I am being over sensitive, but I have found that even Though they have become great friends and Lisa wants to see her, I can get push back from lisa if she is coming over and feel that more help is going to equal more turmoil and upset. I hope I am wrong.
I think it is just that it is someone else telling her what she is going to do that day. The idea of having her come over and just hang out and decide together what they are going to do may work. I don't know how it will work having her help with personal care. I feel we are at the point where Lisa just wants to be at home with no interruptions. Anyone else go through a stage like that ever feel that was the case?
What my sil is suggesting is full time help everyday I have contacted another agency to get more people involved but this now going down a whole new path and I think will lead to confusion and a lack of stability in our lives instead of causing more peace. Health authority would provide me with help 3 days a week but no consistency of who that would be so that would not work. Live-in, house not set up for that.
I am going to pick up Lisa Thursday and start with more time with who we have now and just try and maintain for awhile. I think we are talking a short duration here as things are changing very quickly and Lisa is on the urgent list to be placed. Then what?
If Lisa is on the urgent list to be placed, you may just have to go with the flow until it happens. This is what I experienced. It's no walk in the picnic either way.
Ron, When we need help, there is always tension between going through the stress of breaking someone in to help us as opposed to just doing the job ourselves. Sometimes people tend to go too far in one direction or the other. (We see examples all the time in dementia caregiving.) But that is a decision that should be made by you, not by your sister-in-law. She may not realize that even under the best of circumstances, there is always an orientation period for home health aides and there are many glitches. It is very disruptive to have someone else in your house and every time a new aide appears, there is a learning period. And you are not dealing with the best of circumstances since Lisa resists having a helper in the house.
I understand that you don't want to get into a power struggle with your sister-in-law but unless she has been in this situation herself or has professional experience with dementia caregiving, I don't see how she can be helpful. It sounds like she does not want you to admit Lisa to LTC and thinks you can delay that event by getting more help. In the end, it is for you, not her, to make this decision and you cannot allow her to interfere with your best judgment about Lisa's care.
This is in regards to the timeline of 5-7 years. I start year fourteen as a caregiver next month. I barely remember any other life now. I have a hard time remembering "us" as we were before this disease changed both our lives forever.
I wish I would have known at the beginning how long this would go on. It would have made it much easier to make smart decisions about a whole lot of things. I've always thought that when I get to the end, that's when I'll be able to see clearly what decisions I should have made all along the way. But with this disease, unlike school, you always have to take the test first, and then you find out what subject the test was going to cover.
Last night while DH was sleeping, I caught up on some magazine reading, and found this quote:
"I can't go back to yesterday... I was a different person then."
That just spoke to me. I really do feel like I'm a different person now than before this whole thing started. Just wish I had time to get more acquainted with this new person--and to be nicer to her--but DH's care pretty much takes up all my time and energy.
As incredibly difficult as this is for both of us, we can never wish for it to end, because of what that means. I think this is a perfect living example of being between a rock and a hard place.
I'd like to add to the comments about having an aide, but all the pages on that topic wouldn't fit in the space allowed here. On a positive note, though, we had two aides who stayed with us about a year and a half each. They were wonderful people, and I couldn't have managed this long without them. It's the other aides who could supply enough drama for an entire book on the subject.
Hi Jan. It was 14 years for me, too, just a long, slow downward spiral. I almost could have written your post. Thinking back, what saved me and gave me a life was just taking it one day at a time, making the most of any good moments, and making sure to have at least a little of my own, good life within the limitations. Crafts, hobbies, long walks if you can get out, maybe a pet...things that can be done on your own at home...are helpful. And I think that if it's possible to work, as tiring as it is, holding on to the job helps.
So respite time ok but not so much peace. As mentioned went away with my two sons both in mid thirties for a few days isf skiing. Youngest son very emotional caring loveing young man but has an aggressive antisocial type personality. So hard to understand. No matter what we say it is wrong, could be talking about the weather and all of a sudden did we know the weather is controlled and that we are just sheep believing all this garbage we are being fed screaming that we do not listen or understand him. We never listen to him just blind to what is really going on in the world. So let's say stressful and really after all these years do not know how to help him as he will not accept anything that is said to him, anti doctors, anti government anti everything except all these like conspiracy ideas. He has isolated himself from everybody and then will be crying to us that nobody understands and he has nobody in his life? So we had an ok time but always on eggshells seems like I go from one issue to another. Don't get me wrong he is a good young man but has gone down a path that has given him and is going to give him a very difficult life.
Then Monday I get a call that there is a bed for Lisa, however in a place that I would not send her plus I am away and have to answer like with the next 24 hours. Explain I am away and I cannot do that. Naturally my case worker is away and the temp well let's just leave it at that. Then I get a call saying If you don't take it you are off the list and will have to start again! Finally got them to agree to leave as is until my worker gets back then we will have to deal with it.
Pick up Lisa tomorrow and don't know what I will face. Life goes on.
Rona I am so sorry that things are so chaotic for you right now...At one point in an earlier thread I believe you commented that you thought you and I were at similar stages in this journey, that being whether to place our loved or not...In early January, I made the decision to change my choice of homes from the current one which was chosen because of a longer wait time but was not my first choice, to my actual first choice of long term care homes which has generally a much shorter wait time...I did this thinking there would likely be an opening in the next 2 - 3 months...well damn...didn't they call me on February 1 saying they wanted to take him in on the 3rd...It was like shellshock for the next 2 days and it was just heartbreaking to take him there but I managed to go through with it even though it just hurts so badly to have done it...it's been 5 weeks since he's been moved into long term care and it is still so very hard...initially when they move in they go to a room that is shared with 3 others and as semi private room becomes available they get moved to their own rooms...By rights he should have been the fourth person to move out of that room as he was the last in however they called 2 days ago to say they would like to move him into his semi private room as there was room available...when I questioned why he was being offered a room ahead of others they said because of issues with 2 other men, they felt it was best to move him...hubby is in no way difficult...in fact he is probably the dream resident...his manor is quiet and docile, he doesn't give anyone a hard time, is agreeable to whatever activities are going on and doesn't speak...apparently its the not speaking part that bothers or confuses the other gentlemen...I am really quite happy that the staff have realized that hubby is a little more vulnerable in that he cannot speak up for himself and have moved him because that was in his best interest and they are always trying to keep him engaged to whatever degree he can participate...He seems content to be there and I haven't seen any signs of discomfort or stress at being there from him which is a good thing...It is getting ever so slightly easier to visit him and I am thankful that some of the other residents are quite chatty, even though it requires entering their worlds which depending on the cognitive impairment is vastly different from the real world, but they speak and that helps...hubbys lack of speech didn't seem like such a big deal when he was at home, but in the care home now the visits sometime seem like time stretches on so slowly and are almost awkward in a sense...it doesn't help that I am usually on the verge of tears every time I go, but I am thinking that will get easier in time...at least I hope it will...the hardest thing to come to terms with is that hubby lives in a world much different than I do and I have to wrap my head around the fact that he appears to be quite content in this world which is so diminished from my world...It breaks my heart to see him not initiating anything...no conversation, no smiles...but yet seems happy to sit and watch all the goings on...to me it seems such a sad thought that he may spend the rest of his life just sitting and watching, but in his world that seems to be enough...in my world it just shatters my heart...do I regret placing him? a wee bit...could I have kept him at home longer? yes, but we would eventually get to placement no matter what...I have to learn to accept that yes hubby requires much care, but he doesn't require me to be the provider of it which is almost like saying he doesn't need me and that's a difficult pill to swallow, but I'm trying which is all I can do...I have yet to figure out what to do with myself now that I have no caregiving duties 24/7 and right now don't feel highly motivated to fill my time with anything other than just doing nothing...and that's ok for now...So while this being here and hubby being there is a new reality, at the end of the day he is being cared for well and I am under much less stress and we will survive this new situation...On a bright side note: the winter here in "Winterpeg" has treated us kindly this year...in fact we have forecast temperatures of around 50 degrees farenheit for 5 days in row...not typical at all but I'm not gonna complain lol...Geez next thing we know Hell will be freezing over lol
I don't know why they don't just leave you on the list and go on to ask the next person down. What difference does it make to them if you take the first available bed or not?
Very good question Elizabeth! Seems the bureaucracy is more interested in what would be deemed fairness to all than what is best for the individual. You cannot just wait for the facility you want to come up. A problem I see with the public system. Don't get me wrong it is great that vulnerable people, people who have nothing will be taken care of. Here the most you can pay is up to 80% of your income to a maximum of about $30000 a year. So people who have more pay more. This is the income of the individual not of the couple. So everyone is equal nobody gets to choose no matter how much you pay if you don't take the bed then get off the list and come back when you are ready is the attitude of the placement people we just have too many people waiting so if you don't take it you must be able to handle it.
we all know there are some places that we feel would be the best fit for a Number of reasons and some we don't but from what I see that is not considered. Take it or leave it.
So I will weave my way through this hope I will get another chance at one of the places I feel would be best but at the end of the day if I have to find a private bed then so be it I will not put her just anywhere. The silly thing is many of these places have both private and public beds, same facility, same care, same rooms, private you will pay At least double if not more for same service in the same building.
Well, first day of daycare for Dan. Got him up in time, delivered in time, he didn't ask very many questions.....I took him in, the staff seemed to make him feel welcome, so I left. I had to go to the doctor, so I would pick him up "later". Then I went home, had one of those cries that come from the gut - felt like a mommy taking her child to the first day of school. Nobody called me all day, so I figured everything was okay. Went a couple of places by myself, got a frozen coffee drink & went home for a while to read. Oh, forgot to mention that I really did get to the doctor - endoscopy & CT scan coming up!
Anyway, picked Dan up at 5:00, the nurse said he was going to start looking for me - everyone else was gone & he thought I forgot him :( He seemed happy & bright. On the way home I asked what he did today, of course he didn't remember anything. When we got home, he began to tell me what a boring day he had, if the VA wants him to go there again, tell them to send somebody else, that he just sat & waited all day & that he won't go back. Then he asked me who raked the leaves, was it him? That was like how many months ago....& it wasn't him! He ate like he was starved, makes me wonder if he even ate any of his lunch. I will talk to them tomorrow. I know the day just wore out what little brain action there is, trying so hard to keep the old "stiff upper lip" & smile & laugh at everything, understanding nothing. How awful it must be. Tomorrow, he won't even remember being there, but next Wednesday may be a challenge for me! I need to go read now, something that just takes my mind to other places & times.
Hi Mim, Dan's day at daycare sounds like it went pretty well. It often takes weeks for people to get used to going there. As for you, hang in there! His day at daycare should eventually prove to be an enormous respite for you.
Ron, you were going to try to keep her at home for a while anyway, if I remember right. (Because of what your sister-in-law thinks.) I agree with others that the s-i-l shouldn't get a vote, but in any case, my question is: If you have to take a facility that isn't one of your picks, couldn't you then work with the social workers to get her transferred to one of the facilities that you do want? In the States, that is a common strategy, although I know Canada is different.
Mim, I'm glad Dan got started at the adult day program. Even if all you do is sit in your comfortable chair at home and look out the window, that gives you some real down time and a break. When Larry's 4-hour private aide was here, sometimes I would just go to the library and sit and veg...kind of zone out looking at magazines or whatever. I liked it that it was quiet, no cost, and there was no food there for me to (oink) pig out on.