Jean in Newcastle Posted October 31, 2014 Share Posted October 31, 2014 Synopsis of situation: MIL has dementia - probably moderate, I'd say. She knows all of us. She doesn't always know where she is. FIL has Alzheimers - mild. If he's not tired he's still pretty sharp. If he's tired, then he starts forgetting something done even a couple of hours previously. MIL has been in the hospital with diabetes related episodes - either extreme hypoglycemia or extreme hyperglycemia - 3 times in the last 2 weeks. I just brought her home to their house two days ago. We have a home health caregiver (CNA) coming for 8 hours daily now. One caregiver was nice but clueless, the next one was great but is booked with other clients. MIL is starving herself to death. I've heard that this is common in dementia? We are pushing soft foods, protein drinks and fluids. Here is my battle: 1. They want to stay in their own home. But I don't know how long we can keep them in their home. What we have now with the caregivers is a temporary band-aid, I think. 2. MIL is adamant that she doesn't want to go to a nursing home. She doesn't always know where she is, but I think she would still notice a nursing home. 3. FIL has put down a deposit on a retirement center. It is one of those with a tiered system of independent apartments, assisted living, something they call transition care for those with lower levels of dementia and then memory care. Memory care is pretty much a nice nursing home. They are supposed to evaluate MIL next week to see where she would fit best. 4. ILs are Filipino. A huge issue has been them wanting Filipino food. This place serves a large demographic and thus serves a wide range of food. Asian food is maybe once or twice a week - not every day. I worry that they aren't going to like the retirement place but there is no better alternative in retirement places. We've gone through a broker of elder care services and we've looked at everything. This place fits the best financially, location-wise and amenity wise. I worry though that MIL and FIL might decline more if they go there simply because it will be a stress. This isn't really my decision though - dh and his two sisters (one farther away) are helping the ILs make the decision. Dh is churned up by all of this too. 5. Right now we have a tag team of SIL, dh, and I who are coordinating care for the ILs. SIL and dh both work. Dh actually works two jobs. Because the home health thing is new and we don't have good consistent person yet, I've been driving 40 min. to their house every day. The kids mostly stay home and do school on their own. We got away with that for a couple of days but dd hasn't done math in days because she needs me there. I'm fairly sure she's slacked off on other things too but again she really needs me there. And here is the crux of it for me. I am happy to help the ILs daily even if needed. I am happy to help my kids. But I really can't do both at the same time and so I help the ILs for a few days, neglecting the kids. Then I help the kids for a few days, neglecting the ILs. And this is churning me up. I'm not sure what I'm asking. So is you have anything to say or contribute, please do. Quote Link to comment Share on other sites More sharing options...
MysteryJen Posted October 31, 2014 Share Posted October 31, 2014 :grouphug: Jean. No real advice here. Maybe your kids can go with you to the IL's? Quote Link to comment Share on other sites More sharing options...
JuanitaL Posted October 31, 2014 Share Posted October 31, 2014 :grouphug: I don't have anything to say - just hugs and empathy. One thought though - as far as the food goes - it may end up being easier for you to take food to them several times a week than going out to their house and helping to care for them there. While going through this with my grandmother several years ago my mom would adamantly tell me "just put me in a nursing home - make sure I'm taken care of - but I don't want you all going through this". I should have had her put it in writing :closedeyes:. Quote Link to comment Share on other sites More sharing options...
NicksMama-Zack's Mama Too Posted October 31, 2014 Share Posted October 31, 2014 My FIL was placed in a very nice assisted living home due to dementia. He cussed my dh out the whole way there when he realized what was happening. Per advice by the home's manager/owner, we stayed away for three weeks while he adjusted to his new home. When we came for the first visit, he was very happy and settled. A year later, I couldn't drag him out of there if I wanted. The staff are his family. I hope your ILs are able to adjust. I think most people do. Hugs, K Quote Link to comment Share on other sites More sharing options...
myfunnybunch Posted October 31, 2014 Share Posted October 31, 2014 Oh, Jean. :grouphug: I don't really have any advice. I can't even imagine how difficult it must be to try to balance honoring their wishes with their very real needs for care, and adding cultural issues to the mix makes it even more difficult. Praying for peace as you make these difficult decisions. Cat Quote Link to comment Share on other sites More sharing options...
Wildiris Posted October 31, 2014 Share Posted October 31, 2014 Where I am, a diagnosis of dementia will place a person in memory care and not assisted living. The cost of memory care and assisted living is $$$$. Could you hire 24/7 live-in care for both of them? The cost may be less, the disruption may be less, and the outcome of better care might be worth it. I just placed my mother in memory care, but if she had been willing to move closer to her kids when she was able, I would not have placed her in a memory care facility. The care is OK, but the food is not great in memory care. I would rather have had her stay in her own home and bring care in so she could stay in familiar surroundings and eat better. The one plus of memory care is socialization. In my mom's case being around others has helped her function better. Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 31, 2014 Share Posted October 31, 2014 People with dementia often seem to go downhill when they move to a facility. They lose their familiar surroundings, and it makes everything else worse. I'm sorry, but that is just a fact. Having said that, taking care of people with dementia gets harder and harder as they get worse and worse. They start to do things like get up in the middle of the night and wander around the neighborhood, forgetting where they live. They increasingly need 24 hour awake caregivers. I have seen people handle that in a lot of different ways. A memory facility is one. A night nurse is another. Dementia day care a few days per week is a third. If you have a home caregiver, I think it is wise to drop in on them frequently and not at the same time every day. Same with a facility. That's the best way to ensure good care, and it's not a guarantee. If I were you, in the early stages I would bring my dd along sometimes and do math and caregiving on the same days. But I'd be looking for other options down the road. A lot depends on what insurance your IL's have and whether it covers any home care. I think that the diet issue is pretty significant. People's bodies adjust to their diets increasingly as they get older. If they don't have appetizing or enjoyable food, they probably won't eat enough. As it is, with dementia people tend to forget to eat. Having said that, if they are in a facility you can bring them food once or twice a week, and that would be a lot easier than visiting their home every single day. Just something to consider. I'm really sorry this is so hard. They don't call it the 36 hour day for nothing. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 31, 2014 Share Posted October 31, 2014 Another thing to think about is getting any wills, trusts, powers of attorney, etc. done NOW if they haven't already been done. They need to be done before they can no longer sign for them (and it is likely getting close). Otherwise you have to go to court and get guardianship or other legal powers through the courts. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted October 31, 2014 Share Posted October 31, 2014 Don't churn over it. This is a stressful but temporary life situation and will be solved. A few missed math lessons will not have a long-term impact. Do the best you can now without bringing about another health crisis in your own life. Can you speed up the intake process at the nice place that serves Asian food twice a week? As difficult as it is, it seems the best option. Your IL's cannot really make decisions for themselves anymore since they suffer from various ailments affecting judgment. However, your FIL initiated the assisted living care and kudos to him for realizing it's time. MIL will probably get used to it. Good staff in places like this should know how to deal with reluctant newcomers. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 31, 2014 Author Share Posted October 31, 2014 We have all legal papers signed etc. Home care is less expensive than the retirement place at this level of care. At higher levels of care, the retirement home is less expensive. Quote Link to comment Share on other sites More sharing options...
Seasider Posted October 31, 2014 Share Posted October 31, 2014 Oh Jean, what a tough place you are in. Personally I think much of what makes a place home for them will be that they are together. Also, your care team may be holding steady for now, but that's probably not sustainable. If the retirement/transition facility was selected and initiated by FIL, I would aid him in making that transition with his wife. How well did they adjust to their recent move? If I remember correctly, they recently downsized? I keep thinking that your mind and schedule would be relieved to know they were in a place to receive appropriate care. Also, once they are settled, you and the family would likely have more spare time to prepare food they love and bring it over to share with them. Hard choices. You have my prayers. Quote Link to comment Share on other sites More sharing options...
hornblower Posted October 31, 2014 Share Posted October 31, 2014 Take care of yourself first. Then your children. Then your dh. Then your il's. I'm in a similar position with dh's parents & have just seen this play out with the parents of a dear friend. It sucks all around no matter which way you go, but honestly, moving into a good care home is I think the best choice. (The only possibly better choice is if you're willing to have them & their aide move in with you, but that's not something I would recommend to most people. Only some families and relationships can handle that... ) At some point, the "I want to stay in my own home" stuff is just pure selfishness. The entire family is running around, putting out fires and lurching from one crisis to another just so some older person can continue their delusion of coping. It's just not fair. When we had a bout of this when mil was hospitalized for surgery, leaving my fil (dx with alzheimer's) at home to try to cope on his own, the image I had in my mind was the family running up and down the street with an outstretched blanket, while someone is teetering in a window above, yelling 'I'm FINE!" Um, no, you're not. And the only small extent to which you're even remotely coping is because everyone around you is doing a whole bunch of stuff that you don't even realize is happening. Don't guilt yourself & don't wreck your health, your life, your children's educations on this. Pick a good care home and then tweak as necessary. Maybe bringing take out when you visit once a week. Maybe ordering some special food for them. You can tweak it later, but get them moved. (my dh is almost estranged from his parents now because they flat out refused to move. So he refused to help them with anything at home. Stalemate. Can't force someone to move until they become a hazard to themselves or others so we're waiting for someone to get lost or the place to catch on fire or the mice to move in....) Quote Link to comment Share on other sites More sharing options...
LMA Posted October 31, 2014 Share Posted October 31, 2014 So sorry to hear this. From someone who has BTDT, take care of yourself first. Otherwise, you will burn out and can't take of anyone, including yourself. Secondly, hiring a person at the house by themselves is a crapshoot. These kinds of people have plenty of burnout and stress also, never mind the other side issues that could come up. Having them somewhere with a larger staff than 1 is much better in the long run. It is also easier if your FIL gets to choose their living arrangements. Whatever you decide, do not use your own money to pay for anything. All of the ILs' money should be used first, even if you have to sell the house. It keeps the resentment down among family members. For the food issue, I would suggest that, if it is allowed, have family members bring homecooked meals as often as possible. Let me tell you it is much less stressful to bring food than to go to a person's house and trying to get them to bathe or take meds. Let the staff deal with it. You will still have issues like this even with a paid aide and you will still have to go over and try to fix it. (speaking from experience) An aide can't make a person do things he/she doesn't want to do either. ETA: Having just 1 person being the paid CNA every day is too much. Even the people you hired get stressed and need days off. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 31, 2014 Author Share Posted October 31, 2014 Dh mentioned bringing them into our home but even he knows that was wishful thinking and not something we can do. With my chronic illness issues I am not doing such a good job taking care of my own home. I physically could not handle having them here. I go back and forth on feeling like FIL is selfish. Some more churned up feelings! Their recent move - MIL still gets confused sometimes and thinks that a "helicopter moved our house to somewhere else". FIL calls me when she gets like this to tell me that "Mama is out of her head". Nothing I can do about it! The move is only sort of initiated by FIL. He will get concerned, will make a decision, forget the decision, make another decision that is spontaneous and not thought out. . . Quote Link to comment Share on other sites More sharing options...
LMA Posted October 31, 2014 Share Posted October 31, 2014 Dh mentioned bringing them into our home but even he knows that was wishful thinking and not something we can do. With my chronic illness issues I am not doing such a good job taking care of my own home. I physically could not handle having them here. I go back and forth on feeling like FIL is selfish. Some more churned up feelings! Their recent move - MIL still gets confused sometimes and thinks that a "helicopter moved our house to somewhere else". FIL calls me when she gets like this to tell me that "Mama is out of her head". Nothing I can do about it! The move is only sort of initiated by FIL. He will get concerned, will make a decision, forget the decision, make another decision that is spontaneous and not thought out. . . My biggest concern is if you think they need to move, how will you get them to move if FIL is not following through? lt's very hard to make someone move. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 31, 2014 Share Posted October 31, 2014 I remember going through all of this with my grandmother. I am glad that they have the legal stuff all in order. You might check with the facility they are looking at moving to. Many of them have social workers that can help you navigate the move and talk to FIL, etc. Quote Link to comment Share on other sites More sharing options...
hornblower Posted October 31, 2014 Share Posted October 31, 2014 & :grouphug: no wonder you were asking about coping with stress a while back. Take care of yourself, Jean. Quote Link to comment Share on other sites More sharing options...
Danestress Posted October 31, 2014 Share Posted October 31, 2014 Your post brings back painful memories of the year when my father was suffering the most with Alzheimer's. He died four years ago. I had several things that made my situation easier than yours. My mother was healthy and was able to be the primary decision maker. My health was good - I know you have chronic health issues. My parents lived less than 2 miles from me. Even so, I remember it as a very difficult time. I was stretched very thin. I had a tremendous sense of guilt. Whatever I was doing, I felt guilty about what I wasn't doing. Alzheimer's is a thief. It will steal your loved one's mind, it will steal your sense of being a good friend/daughter/spouse to the patient. It will steal money and dreams and hopes for the future. I think my best "big picture" advice it to recognize that this is the case. Your MIL or FIL may end up needing care that simply can not be provided at home, and how she may have expressed her opinions about this in the past will be irrelevant. That may end up being something you can not control. If it becomes impossible for your in-laws to live at home, remind yourself that you are not the enemy, even if they can not see that. Time is the enemy, dementia is the enemy, but you are just doing the best you can. Speak nicely to yourself. If you are able to take food to them, I would keep finger food out and available. This requires the presence of someone who is able to supervise where the food is and how long it has been out, but many people with dementia do best when they can just randomly pick things up and eat a bite of this, a bite of that. And it helps to keep you out of the dynamic where you are trying to coax someone to eat a larger meal, who doesn't want to be coaxed to do anything. My father developed a taste for sweets, so we mixed his medications in with small amounts of ice cream or pudding. As a side note, carefully watch the actual eating. Problems with swallowing can appear relatively suddenly. Also, remember that aging and mental changes can involve sensory changes. My father didn't drink enough liquid in general, and I don't think he would have agreed to drink something thick like a nutritional drink. There are lots of legal issues, of course, and practical things someone could advice you on. I think "The 36 Hour Day" had good advice. One really good thing I took away from this experience was a habit of dividing everything I do into two categories. (1) Things I have to do and (2) Things I want to do. If I didn't have to do something and didn't want to, I didn't do it. I stopped doing a lot of volunteer work, stopped watching tv to please my husband, backed away from social relationships I didn't enjoy, stopped taking meals to people, etc. I withdrew socially and that probably wasn't good, but it was survival. In the end, I realized that I didn't have to do almost anything. I didn't even really *have* to care for my Dad. There was no law. But I felt liberated by recognizing that I was there because I wanted to be. I wanted to be a good daughter. I wanted to be someone who cares for the most vulnerable and frail. I wanted to support my mother. And I also loved him. I wanted to be the person I was when I was with him - patient, caring, suspended in time. I had a habit of feeling sort of 'put upon' before - "I have to do this, I have to do that." But when I recognized that I really WANTED to get that math lesson done, finish the laundry, spend some time with my husband, call the insurance, walk the dog, eat breakfast with my father, etc, I felt better about what I was doing. I admitted my own motives. If I wanted to do something because I wanted someone's approval, I could decide if that was a good motive, but at least I recognized that I was doing it because I wanted approval, not because I "had to." It's just a habit of thinking that has made my life a little better, so that even now, if I am doing something for my family and feeling all stressed, I can stop and think, "Well, why are you making this time consuming dinner? Is it because you want to please the kids? Because you want to eat it yourself? Because you want your kids to have tried this dish?" And sometimes, I decide not to do something because I recognize that I don't really have to do it and the reason I might want to are not worth the pain. For my father, I think it was good that I daily checked in with the fact that I wanted to spend that time with him and be there for him - who wants a resentful caregiver? And for the rest of my family, I guess it's the same. Anyway, that's a little abstract, but it really is my best non-practical advice:) Quote Link to comment Share on other sites More sharing options...
Tess in the Burbs Posted October 31, 2014 Share Posted October 31, 2014 My mom went through this with my grandma. It was rough and eventually she had to get a court order to get her into care. She was crazy by then....beating on neighbor's doors thinking it was her place...scaring her neighbors! They had to sedate her and move her 3 states away so mom could come check on her weekly. I have been clear with my mom she needs it in writing NOW what she wants so I don't have to go through all that. It's not your parents. it's nice you want to help. But your dh and his sisters need to decide something and follow through NOW. If they are staying at home with 24 help then make a limit of how long. Six months? A year? A date on the calendar to transition is needed. Then they can be more in control of this change. I agree with bringing them the food they like a few times a week when they do move to a higher care facility. My grandma was 70 pounds when she passed away...she had stopped eating a decade before really....just bits here and there. If they like something bring it to them. it's so hard when things are ready and everyone is on the same page. I would get FIL to talk with the family NOW and get a plan in place. And don't change your mind b/c he can't remember. It will be better for all to get them moved sooner than later when they will only be confused and scared. ((HUGS)) Quote Link to comment Share on other sites More sharing options...
Starr Posted October 31, 2014 Share Posted October 31, 2014 Jean they really aren't able to make the decisions. You would see this in other peoples families. It's just so hard with your own. Their children need to make it for them now. Nothing is perfect. You are doing more than you can do now. Please be direct and let your family know you can't keep this up. :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Farrar Posted October 31, 2014 Share Posted October 31, 2014 Grandmother in law has mild dementia and she improved when she got to the assisted living situation. My general understanding is that it's better to get somewhere and stay there. Every time health, memory and independence slip, it gets harder and more expensive to find a place that will work. On the other hand, being able to stay in the home is really often the best option, but it can't last forever. Quote Link to comment Share on other sites More sharing options...
Joanne Posted October 31, 2014 Share Posted October 31, 2014 I assume all other medical possibilities have been evaluated and screened. I encourage you to stop treating this like other issues/diseases - what you have going on is progressive, and the symptoms will create more chaos and discomfort. I encourage you to help your DH and his family frame this in terms of proactive decisions for the actual trajectory. Where "they" (in laws) are now is best case - it gets worse from here. Looking at it this way, it seems fairly clear an institution is the best option, and so I'd encourage you to put your energy into making THAT work the best it can. Quote Link to comment Share on other sites More sharing options...
G5052 Posted October 31, 2014 Share Posted October 31, 2014 As hard as it is, it sounds indeed like they're at the point where they aren't really able to make their own decisions. At that point either they go into a self-directed spiral down that is not going to get better, or they go into a facility that is going to take off most of the burden that the family is bearing. Neither are good, but the second is better in the long run for all concerned. You have to accept that it is just plain difficult and that tempers are going to flare. The eldercare story with my parents would take chapters and chapters to relate, but home care was a disaster. Soon none of the agencies in that are would even consider providing services. Adult Protective Services, my dad's doctor, and a top-notch elder care lawyer couldn't get them out of that house. When my father was finally hospitalized for a neglect-related illness, I worked with his doctor to make sure that he never went home. He went to a lovely nursing home and died a few months later in hospice care. Then we had my mother. No way could she stay in that house. Finally a family friend somehow convinced her to try assisted living. She went to a furnished unit for just a month, and she loved it! So she moved there and sold the house. You also need to find out what the criteria is for dementia care. The one my mother was in frankly kept her way too long in the main section. She constantly wandered the town at all hours with her walker, taking rides from anyone when she was tired. There were many times that friends saw her along the highway inappropriately dressed and brought her back to the assisted living facility. Several businesses would call the police to have her removed anytime she came in, and there were at least two restraining orders that I know of. I had fits about this and hired the lawyer again, but nothing could be done because she was not considered mentally incompetent yet. When she was requiring full-time supervision anytime she was out of her room in order to protect the other residents and then seriously injured a worker, they finally moved her to the dementia unit and declared her mentally incompetent. Frankly I would have put her straight into the dementia unit to spare all of those she tormented while in the open unit including those in town. I still feel bad about that, even three years after her death. I was not the relative in charge of her care, and there was nothing I could do legally. Quote Link to comment Share on other sites More sharing options...
bolt. Posted October 31, 2014 Share Posted October 31, 2014 There are lots of options on your table. One that you haven't mentioned (though you may have thought about it) is this: When you said, "Dh mentioned bringing them into our home but even he knows that was wishful thinking and not something we can do. With my chronic illness issues I am not doing such a good job taking care of my own home. I physically could not handle having them here." I got the impression that it would be physically and logistically impossible for you to handle being their caregiver with them in your home. If that is the only thing you could not handle about them being there, perhaps consider having them move in with you, but continuing to hire care and help -- 8 or more hours a day, for *all of you*. Then your house will be kept, and your health could be somewhat cared for, and the hardest parts of their healthcare can be "for the pros" (including outbursts and times of confusion) and the easy parts -- but also the warmest parts, the parts that matter that they come from family -- could be something that you do for them (while their staff do your housework). (Of course, if it would just be plain unpleasant in terms of getting along and being able to live peaceably under one roof -- this wouldn't be a good option at all.) Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted October 31, 2014 Share Posted October 31, 2014 Something else to keep in mind--personal hygiene really goes downhill with dementia, to the point of risking people's health. They don't recognize anyone trying to help them shower, and they get very defensive. And they get to the point where they can't shower themselves. That is something that is extremely difficult to manage within the family, usually. Quote Link to comment Share on other sites More sharing options...
Reflections Posted October 31, 2014 Share Posted October 31, 2014 Hi Jean! I just have to echo that you should be sure to be good to yourself. :grouphug: :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Chelle in MO Posted October 31, 2014 Share Posted October 31, 2014 I'm sorry you and your family are dealing with all this. It's such a hard time in life. :grouphug: Quote Link to comment Share on other sites More sharing options...
Tammyla Posted October 31, 2014 Share Posted October 31, 2014 Guilt...Please don't allow this to box you into a care decision you are not able to carry out; both dementia and Alzheimers just get harder and harder as they progress. Dementia and Alzheimer's suck; I'm so sorry to hear you are dealing with both at the same time. We have a good friend caring for his mother and the two of them have suffered, because he feels helpless to go against her wishes to stay in her home. His mother recently broke her hip and pelvis, when she was washing a comforter in the basement at 3 a.m... They have someone designated to do the laundry, but she doesn't remember so many things and time is just not relevant to her anymore. He would have gladly washed the comforter for her, but she often lives her life 50 years ago thinking he is a little boy. It is just so sad for the two of them, even with other family chipping in here and there, he cannot be awake and on duty 24 hours a day. Quote Link to comment Share on other sites More sharing options...
Twigs Posted October 31, 2014 Share Posted October 31, 2014 :grouphug: :grouphug: :grouphug: Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 31, 2014 Author Share Posted October 31, 2014 The good thing in all of this is that SIL, dh and I are all working really well together. We all check in with each other to make sure we've communicated whatever it is we're handling and any changes. The bad thing is that their conditions yo-yo so much each day that it sometimes feels like a moving target. But we try to provide enough care for the bad days and then go with the flow on the good days. Quote Link to comment Share on other sites More sharing options...
Reefgazer Posted November 1, 2014 Share Posted November 1, 2014 Oh, gosh, I've sympathy for you, but no advice. I can see myself careening off in this direction within the next few years with my stubborn parents (they are in the upper 80s-90s). Good luck! Synopsis of situation: MIL has dementia - probably moderate, I'd say. She knows all of us. She doesn't always know where she is. FIL has Alzheimers - mild. If he's not tired he's still pretty sharp. If he's tired, then he starts forgetting something done even a couple of hours previously. MIL has been in the hospital with diabetes related episodes - either extreme hypoglycemia or extreme hyperglycemia - 3 times in the last 2 weeks. I just brought her home to their house two days ago. We have a home health caregiver (CNA) coming for 8 hours daily now. One caregiver was nice but clueless, the next one was great but is booked with other clients. MIL is starving herself to death. I've heard that this is common in dementia? We are pushing soft foods, protein drinks and fluids. Here is my battle: 1. They want to stay in their own home. But I don't know how long we can keep them in their home. What we have now with the caregivers is a temporary band-aid, I think. 2. MIL is adamant that she doesn't want to go to a nursing home. She doesn't always know where she is, but I think she would still notice a nursing home. 3. FIL has put down a deposit on a retirement center. It is one of those with a tiered system of independent apartments, assisted living, something they call transition care for those with lower levels of dementia and then memory care. Memory care is pretty much a nice nursing home. They are supposed to evaluate MIL next week to see where she would fit best. 4. ILs are Filipino. A huge issue has been them wanting Filipino food. This place serves a large demographic and thus serves a wide range of food. Asian food is maybe once or twice a week - not every day. I worry that they aren't going to like the retirement place but there is no better alternative in retirement places. We've gone through a broker of elder care services and we've looked at everything. This place fits the best financially, location-wise and amenity wise. I worry though that MIL and FIL might decline more if they go there simply because it will be a stress. This isn't really my decision though - dh and his two sisters (one farther away) are helping the ILs make the decision. Dh is churned up by all of this too. 5. Right now we have a tag team of SIL, dh, and I who are coordinating care for the ILs. SIL and dh both work. Dh actually works two jobs. Because the home health thing is new and we don't have good consistent person yet, I've been driving 40 min. to their house every day. The kids mostly stay home and do school on their own. We got away with that for a couple of days but dd hasn't done math in days because she needs me there. I'm fairly sure she's slacked off on other things too but again she really needs me there. And here is the crux of it for me. I am happy to help the ILs daily even if needed. I am happy to help my kids. But I really can't do both at the same time and so I help the ILs for a few days, neglecting the kids. Then I help the kids for a few days, neglecting the ILs. And this is churning me up. I'm not sure what I'm asking. So is you have anything to say or contribute, please do. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 1, 2014 Author Share Posted November 1, 2014 So day 3 of home health care Despite having it explained over and over again that this is daily, they are so surprised every morning when a caregiver arrives! I suppose as long as the surprises are nice, it must be nice to have daily surprises. . . . Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted November 1, 2014 Share Posted November 1, 2014 Can you maybe leave them a note about it that they see first thing when they wake up? So that it's not so much of a surprise? Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 1, 2014 Author Share Posted November 1, 2014 Can you maybe leave them a note about it that they see first thing when they wake up? So that it's not so much of a surprise? SIL goes over first every morning and wakes them up. She reminds them about the caregiver coming. Then the caregiver comes an hour later and surprise! So. . . no! :lol: The other day I brought MIL home from the hospital. It was a difficult car ride and a difficult time getting MIL inside and in her bed. Pretty memorable if you ask me. About two hours later, FIL says to me, "So when do we pick Mama up from the hospital?" I looked at him in surprise (see, they aren't the only ones who have daily surprises!) and say, "Um, she's home and is sleeping." He peeks into the bedroom and turns to me and says, "Oh, she's home!" :laugh: :laugh: Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 1, 2014 Share Posted November 1, 2014 There are lots of options on your table. One that you haven't mentioned (though you may have thought about it) is this: When you said, "Dh mentioned bringing them into our home but even he knows that was wishful thinking and not something we can do. With my chronic illness issues I am not doing such a good job taking care of my own home. I physically could not handle having them here." I got the impression that it would be physically and logistically impossible for you to handle being their caregiver with them in your home. If that is the only thing you could not handle about them being there, perhaps consider having them move in with you, but continuing to hire care and help -- 8 or more hours a day, for *all of you*. Then your house will be kept, and your health could be somewhat cared for, and the hardest parts of their healthcare can be "for the pros" (including outbursts and times of confusion) and the easy parts -- but also the warmest parts, the parts that matter that they come from family -- could be something that you do for them (while their staff do your housework). (Of course, if it would just be plain unpleasant in terms of getting along and being able to live peaceably under one roof -- this wouldn't be a good option at all.) I don't know if having a caregiver around 8 hrs a day in your own home is really conducive to taking care of yourself and your kids...unless Jean has a very large house where ILs could move in on a separate floor. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 1, 2014 Share Posted November 1, 2014 SIL goes over first every morning and wakes them up. She reminds them about the caregiver coming. Then the caregiver comes an hour later and surprise! So. . . no! :lol: The other day I brought MIL home from the hospital. It was a difficult car ride and a difficult time getting MIL inside and in her bed. Pretty memorable if you ask me. About two hours later, FIL says to me, "So when do we pick Mama up from the hospital?" I looked at him in surprise (see, they aren't the only ones who have daily surprises!) and say, "Um, she's home and is sleeping." He peeks into the bedroom and turns to me and says, "Oh, she's home!" :laugh: :laugh: Awww, I know it's not really funny but this made me smile. They may adjust to assisted living better than you all think. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 1, 2014 Author Share Posted November 1, 2014 I don't know if having a caregiver around 8 hrs a day in your own home is really conducive to taking care of yourself and your kids...unless Jean has a very large house where ILs could move in on a separate floor. ILs can't move here for a couple of reasons. (None of which I would expect Bolt to know!) We have dogs and a cat. MIL is allergic to the cat. They can visit here just fine. Actually I take that back - they can't even visit here just fine because our home is a split level and MIL can't handle the steps up to our living room anymore. Living here would not work. When dh was fantasying of us taking them in he was talking about us selling this house and finding a new place where they could be in an attached mother-in-law apartment. Very nice in theory but we don't have the time to do this or the money even if we got the ILs to contribute to the cost. If this was the way to go we should have done it at least five years ago. Quote Link to comment Share on other sites More sharing options...
Storygirl Posted November 1, 2014 Share Posted November 1, 2014 :grouphug: Jean, As a teenager, my mother cared for her mother with Alzheimer's in our home, without any home health assistance, but my mom also worked, so my sister and I helped a great deal (I would never recommend this, by the way). Now my mother has Alzheimer's. I took her into my home when it became obvious that my dad was not going to be able to give her the care she needed, and she lived with us for almost a year before entering a nursing home. So I'm going through this a second time. There is no part of this that is easy. I'm sorry. I just wanted to add a couple of thoughts to what has been said already. * Since you have some health issues and other things going on with your immediate family, I would not recommend that you think about moving them into your home. I know you said that you wouldn't but another poster mentioned it, so I wanted to comment. Having an in-home caregiver would not be enough to counteract the stress that this would cause on your entire family, and you most of all. In case the possibility is raised by your husband or another family member, it is okay for you to say no. * You mentioned that your mother-in-law does not seem to eat. My mother does not eat, either, and must be fed. This is common, Make sure the caregivers know that they are to spoonfeed her if necessary. * I agree with those who recommended that you pop in at various times of day when the caregivers are there. To be frank, when alone with your in-laws, there is no one else there to oversee them, and you won't be able to rely on your relative to tell you what is going on. The caregivers have a heavy responsibility, and your family members will need to be watchful. * Put alarms on the doors, so that if one of them wanders at night, it will at least wake the other. Honestly, you may not feel comfortable leaving them alone overnight for much longer. My dad left my mom alone while he went to work, and it bothered me a lot. She would not have been able to handle any emergency, big or small. People with dementia are adults, of course, but they after a point they need the same supervision that one would provide for a child, and it's hard to know when that point is sometimes. I would say that the need for increased supervision comes sooner than most people realize. With two people with dementia in one house, 24 hour care may be a necessity soon. With that said, I'm glad you are no longer having to spend every day there. Please take care of yourself! Quote Link to comment Share on other sites More sharing options...
Chelle in MO Posted November 1, 2014 Share Posted November 1, 2014 SIL goes over first every morning and wakes them up. She reminds them about the caregiver coming. Then the caregiver comes an hour later and surprise! So. . . no! :lol: The other day I brought MIL home from the hospital. It was a difficult car ride and a difficult time getting MIL inside and in her bed. Pretty memorable if you ask me. About two hours later, FIL says to me, "So when do we pick Mama up from the hospital?" I looked at him in surprise (see, they aren't the only ones who have daily surprises!) and say, "Um, she's home and is sleeping." He peeks into the bedroom and turns to me and says, "Oh, she's home!" :laugh: :laugh: Oh, my. That's something else! It's good to see the humor in it; otherwise, it can get very depressing. Sometimes I think if I don't laugh about it, I'll certainly cry. Quote Link to comment Share on other sites More sharing options...
datgh Posted November 1, 2014 Share Posted November 1, 2014 My MIL struggled was always adement she would stay in her house but eventually the dementia took its toll. Mostly she wouldn't eat or drink because she would always say she was full. This would lead to her getting very lightheaded from dehydration. She fought us all on going into assisted living. Within a couple of months of being in assisted living she loved it. They made sure she ate and kept her busy with all sorts of social activities. With the proper nutrition and socialization plus a regular schedule she improved dramatically. Not enough to go back to her home independently but enough that she is really enjoying life again for the first time in years and her dementia has stabilized. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 1, 2014 Author Share Posted November 1, 2014 Storygirl, MIL is "tagged" with a GPS watch ever since we had multiple Silver Alerts because she would go on walks and not find her way back. I agree that night-time is not safe right now. This is why I'm pushing the retirement home thing because it would give 24 hour supervision and care. Yes, to the spoon feeding. We're dong that. She moans the whole time that she's not hungry. SIL is on "duty" today, Sat. and Sun. Then I'll take over again on Monday. We do have caregiver coverage on all those days but we need to supervise and since we are moving toward the retirement home, there is stuff to do with relation to that. An RN from the retirement home is coming on Monday to asses them (esp. MIL) to see about placement. I'm very glad that we don't have to drag poor MIL to the home and back because that would be very tiring for her and I don't think they would get an accurate picture of where she is right now. The retirement situation isn't set in stone yet but we have put down a refundable deposit to hold a spot for them. Monday will give us more information and then we'll know a timeline etc. It's possible that we could move them there on a trial basis but honestly I think that would be difficult all around if we brought them back home again. Chelle - laughter is good medicine, right! So much of what is going on appeals to my sense of the absurd. Quote Link to comment Share on other sites More sharing options...
Liz CA Posted November 1, 2014 Share Posted November 1, 2014 Sounds like things are well under way. Your daughter only has a few more opportunities to skip math! :) It must be such a relief to all of you to know that they will be taken care of in the assisted living facility. Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted November 1, 2014 Author Share Posted November 1, 2014 Sigh. I got one day off. Have to run over there again. FIL doesn't like all these "strangers" around and is trying to get rid of the caregivers. I know that this is a way to show God's love to them. I just have to remind myself of that - like every minute. Quote Link to comment Share on other sites More sharing options...
Carol in Cal. Posted November 1, 2014 Share Posted November 1, 2014 So, I'm sorry to say this, but what is ahead for you is that they will stop recognizing you, too. You really do have to look at this like they are not themselves, they have been invaded by body snatchers. Even then, it really hurts. Quote Link to comment Share on other sites More sharing options...
Storygirl Posted November 1, 2014 Share Posted November 1, 2014 My mom in the nursing home wears an electronic ankle bracelet that sets off an alarm if she ever wanders too close to an exit door. Now she sits mostly, but she used to be a big wanderer. Once she followed my dad out to the parking lot (appeared at his car window), and she often used to go into other patients' rooms and go through their closets, etc. Her wandering is one of the reasons that I couldn't keep her at my house any more. When my mom first entered the nursing home, she technically did not meet their requirements for the highest level of care, but they could see that she would be going downhill and needing that high level of care sooner rather than later, so they bent the rules for her and put her in the high-care unit from the beginning. They knew it would likely be traumatic to move her after she had already settled in. We appreciated that. Because you have two parents involved, and because I assume you want them to be together, you might ask that your FIL be allowed to be placed in the same area as your MIL, even if he doesn't meet the requirements yet. Even if a rule is in place that technically disallows that, you can ask for an exception (doesn't mean they will give it, of course). It is really hard to be patient. I know that God will bless them through you and will bless you for doing your best for them -- even when they resist it. I had some really hard times with my mom, because she is stubborn and wouldn't allow me to direct her. She couldn't understand that I knew best about some things; she was used to being the one in charge. But we found that she would do things for a home-health aide that she would refuse to do for me (showering, for example). I can sympathize with your FIL, though! I wouldn't like strangers in my home, either. Quote Link to comment Share on other sites More sharing options...
Storygirl Posted November 1, 2014 Share Posted November 1, 2014 Oops -- my first double post. Quote Link to comment Share on other sites More sharing options...
Laurel-in-CA Posted November 2, 2014 Share Posted November 2, 2014 SIL goes over first every morning and wakes them up. She reminds them about the caregiver coming. Then the caregiver comes an hour later and surprise! So. . . no! :lol: The other day I brought MIL home from the hospital. It was a difficult car ride and a difficult time getting MIL inside and in her bed. Pretty memorable if you ask me. About two hours later, FIL says to me, "So when do we pick Mama up from the hospital?" I looked at him in surprise (see, they aren't the only ones who have daily surprises!) and say, "Um, she's home and is sleeping." He peeks into the bedroom and turns to me and says, "Oh, she's home!" :laugh: :laugh: I'd say that's more than mild dementia and would totally justify finding them a memory care facility *together* so they can have at least one stable thing during the change. My mom was in an assisted living and complained all the time about the food, BUT they would deduct a certain # of meals/month from her food plan, so my sis took her out to lunch on Sundays and brought her a hamburger every week. She still needed physical help (diabetes + Parkinson's = very difficult) and ended up moving to a family-home based 24 hour care setting with a CNA/LVN around the clock. They took her to dr. appt. and all, and were there with my sister when Mom passed on...very loving and would fix her *whatever* she wanted to and could eat. And, BTW, the LVN was Philippino. Anyway, it sounds like they need way more help than a tag team can give, and a tag team wears out quickly. As my brother told my mom, "The one thing we know is that this is not going to get BETTER, no matter how much we work at it. Let's plan well ahead so that we can limit the difficulties." (And not wear out the caregivers. It was a very, very stressful time for my sister even with hired caregivers.) I'd second the idea of taking your kids with you for right now, but I wouldn't want that to last long either. I think the best solution for them is a speedy move and time to settle into a new place with the high level of care they need now and will need even more in the future. Quote Link to comment Share on other sites More sharing options...
Chelle in MO Posted November 2, 2014 Share Posted November 2, 2014 You are doing the best you can and that is great! The transition through "can they still live at home?/they need to move/they're moving/they're settling in" is especially long and exhausting. :grouphug: Quote Link to comment Share on other sites More sharing options...
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