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something is going to break....soon.
Not sure if this is whining, venting or seeking advice but I have to bounce the situation with my in laws off someone who understands the difficulty and complexity going on...
So we are still dealing with my dmil (PWD, 84 yo, stage 6 + Alz). She lives with my dfil her husband of 61+ years who is 86 yo and a 24 hour aide in their marital home. The family (which is basically me, my dh, dmil and dfil's only child and of course, and dfil) would like to keep her home for as long as possible since at home she is getting 2 people caring just for her (my dfil and the aide). But, here is the big BUT she is soooooooooo difficult to get to do anything. She has also pretty much lost the ability to walk or move in the last month and she is easily 200-250 lbs. She has taken to hitting, punching, kicking and yelling when asked to do anything such as stand or move any body part. I am assuming that she can't comply, whether that is due to her mental status or just not understanding or remembering anymore. We (dh and myself) do not live with them but live very nearby. I handle all the finances and appts, meds etc. Dh does all the running around and errands, since he is retired. I still work full time but it is quite the struggle. I know you all understand. It is so difficult to accomplish all that needs to be done running my own house, my in laws "stuff" (finances, meds, dr appts, home repairs, maintance, etc), cooking, shopping, eating, going to the dentist and doctor for myself and rest of family, you know the drill.... I try to keep up self care but that is hard....but I digress...
I don't know how long we can keep this up caring for her. My dfil seems like a wreck and that is not good. I have a camera in their house so I see how difficult it is to get her changed or into bed, etc. My dh is going to (I hope) speak to dfil and the aide today and say if she just wants to stay in the recliner then so be in....leave her in the recliner with her feet up. Change her clothes when possible. It does not have to be changed 2x a day. That would be best and optimal but that is going to put someone in the hospital. My dmil has an apt with her neuro on the 18th and this will be a big one since the last apt my dmil was walking and talking and being pretty cooperative. Before anyone asks, she has been hospitalized 2 x since her last appt and she has been tested for uti and there was nothing. It seems just to be a steep decline in functioning over the course of 6 + months. We could test again but I don't see it coming back positive since it was not positive before and her behavior is just daily declining not precipitous.
I am also exploring getting a hoyer lift and a new commode. Also a hospital bed table ( we/she already has a hospital bed), in case she ends up spending more time in the hospital bed. Everyday just seems like one long thing that I hope to get through with out a disaster happening. I feel like I am just waiting for something catastrophic to happen.
Well, I guess this was more of a vent and whine than I thought. No hope right now, just waiting for the next disaster. Everyday one seems to come so, so far I have not been disappointed. <sigh>
Thanks for listening....
You are whining, venting and seeking advice but we all get it.
You, dh and dfil have been at this quite a while now. The aide is another player on your team. But it sounds like your team is a couple players too small now. And getting a bit exhausted, tired and agitated. As I am sure you have read, those of us here that have successfully kept a PWD at home (I was unsuccessful at this) have more "players" on their team. And again, as you know, this disease only gets worse and more time and effort consuming. So far you and your team have done a great job with dmil.
It sounds like the time has come for a bit of a change in game plan. From only my view of things, you have two choices; 1) more help in the house (including adult day services) so individual shifts are shorter or 2) placement of dmil in a MC community. But depending on her ability to be ambulatory, that may have it's additional challenges (let alone financials).
I know if feels like you are between a rock and a hard place and actually it sounds like you are. It is time for a change in the kind of working status quo. That is always a hard thing to do. Finding ideas, accepting changes, making the plan work to the best of your ability and second guessing. Been there, done that. As many others here have.
Maybe others will be able to offer some other suggestions that I do not see at the moment.
Good luck and best wishes, Greg
Thanks Greg and Bethl! I knew people would understand here. Perhaps we need more help but I don't know what form that could take. I think the ship for adult day care has gone.....she is not cooperative. She would not be able to leave the house without help and supervision. Even then she would just be loud and uncooperative. She sleeps almost all day now. Except when they are trying to get her in or out of bed. Who else can we get to help with her? I am working on possibly getting a hoyer lift to make it easier to get her in and out of bed. I fear that putting her in a snf will not be the same level of care she is getting at home. In fact, I know it will not be. Right now she has my dfil catering to her. No one would do as much as he does for her. I don't mean big things I mean those little things like warming up her tea just right or adding or taking away blankets when she is hot or cold. I/we would like to keep her as comfortable as possible. Plus if (and I could be wrong on this) we put her in snf now we would be breaking the family trust (that the house and some money is in) which would impoverish my dfil. I understand that the family home may be saved but dfil would not have enough cash coming in to stay in the home, if he wanted to. Real estate taxes and utilities would probably eat up his income if he did not have the money coming in from the trust. Oooooh this is going to be a disaster... I feel like I am watching a car crash and can do nothing to stop it.
Hi D in Law! I am a D in law too! I have to find more out about "official" palliative care. Our family has considered my dmil in palliative care already in our minds, as we are doing no extra measures. It makes me so mad when the health insurance company calls and asks about her having a Gyno apt or Mammo....I am like WHAT!! An 86 yo with advanced Alz....really. No way! Even had a dr talk about removing moles from her face that are never ever going to kill her. A 6-8 hour procedure....Ah NO! I don't believe she will qualify for hospice by any measure as she is actually very heavy (200-250 lbs and probably gaining weight) and even though we know she is termally ill I fear that actual time maybe years off. It is actually just moving her and getting her dressed that causes most (90-95%) of the distress in the day. When she is up and out of bed she is "fine". She sleeps most of the day. I have told my dh (her son) to go over to their house (I am still working full-time so I can't go) and talk to dfil and the aide about perhaps just leaving her in the recliner for the night. Then they would just have to move her to the wheel chair for "meals" if she tolerates that and to the toilet/commode, again if she tolerates that. The less moving the better.
I am sure I don't know where to start researching palliative care or hospice care possibilities. I fear she is more in the snf stage......
Hospice criteria for late stage PWDs is more about failure to thrive than a six month life expectancy. There are many threads about this.
Thank you, Thank you, Dream Lost! My dmil (and all of us in the family, of course) are going to see her neurologist in a week on 3/18. I will add this to the list of questions to ask. I know that other people have been successful at getting through this difficult stage in this terrible disease I am figuring it is just finding the right combination of help, support and medication. Glad I can take advantage of the great amount of "hive knowledge" available from the good people here.
Oh I so get it gubblebum! Only problem it is my dfil who is going to break!! He is 86 yo and doing all this work with the help of the aide. I do not know what he would think about her going into a snf....but I am thinking that we will have to investigate it, The problem with that situation, as far as I know and my info may not be correct....We would have to break the "family trust" which holds all their savings and their home. If I understand it correctly, if we put her in a snf before jan 2020 then the trust is broken open and the money will be used for the snf.....now that sounds fine but where would my dfil go. Even if the home is excempted his pension and 401K could not support his home. Here on LI, NY taxes alone are $10,000+. For him the taxes are probably more "reasonable" like about $7,000....but then there is heat, water, electric, insurance, maintance and then he has to eat and drive(if he would be by then)....this would be all on top of the grief and guilt I know he would feel for not taking care of her. Not only would he lose his wife of 61+ years but the only home he remember living in. Since she really only causes "problems" when transitioning and does not have a lot of the other problems I have read about here it would seem a shame to separate them for behaviors that happen only for about 1 hour to 1 1/2 hours a day. As always with this disease....no good answers. Thanks for the thoughts. I like the brainstorming of ideas and possible solutions.
From your library ask for any book by Naomi Feil with the word Validation in the title, not an easy read but worth the time spent. You can teach your FIL and show by example how to use it.
Read about community spouse resource allowance, minimum monthly maintenance needs allowance, exemption of home, outlined in above link.
Also look into senior citizens tax exemption and disabled person tax exemptions listed in above link. May or may not help. Call tax assessors office for help.
so here is the update for today....Things with my dmil's functioning is continuing to decline....everyday. Last night my dfil called and said he and the aide could not get my dmil out of the wheel chair and into bed. She just could not do anything. We drove over and lifted her and got her in bed. Of course, today, we have a switching of aides (back to our original aide) at 8:30 this morning. We also told my dfil to not take her out of bed since I don't think she and them can handle the transfer to the wheel chair. I doubt very much that we will be able to transport her, in this condition to the neurologist appt on Monday. I am waiting till the Dr office opens to call them to see if there is something else we can do. Maybe we can get a visiting nurse to come by to evaluate her.... I will also start making phone calls to see what the criteria/qualifications are for either palliative care or hospice care. As the title of this thread says....something is going to break or hopefully I can change things before there is a "break" of some kind.
So sorry to hear of the struggles your dfil is having in the day to day care. I can sympathize as my grandmother was also over 200 lbs the last few years of her life (non-dementia however). The physical toll it takes to even roll someone over from side to side to change a diaper or the sheets is a 2 person job. A lot of their physical strength is still there and would be a help if they were cooperative but can make a lot of tasks impossible if they are resistant.
I would also talk with your physician about her sleeping all day and whether meds need to be adjusted (which can happen as their ALZ progresses) maybe a shorter acting anti-anxiety med may be helpful if her outbursts are limited to only when you are trying to get her dressed or bathed or sundowning.
Also, definitely look into some videos by Teepa Snow and ALZ, they are usually short. Maybe pick out a couple to watch with your dfil about interacting with dmil which might make her a little more cooperative. You sound like a very wonderful dil doing so much for your in-laws. They are blessed to have you in their lives. Good Luck.
Thank you for your kind words Dreamer lost! My dmil was more of a mother to me than my own mother was. So it is really like losing a mother not a mil. She deserves as good care as I can possibly get for her. Of course, the balance between their (the PWD) and our own health and needs is the struggle. I think the stress from this latest development with my in laws has flared up my headaches/migraines. It is not as bad as I have had them in the past (I have figured out how to keep them "manageable") but it is just another thing to deal with. It is also hard to think straight when my head hurts....but I do the best that I can. that is all any of us can do.
Just a quick update for anyone following our saga with dmil....I put a call in to my dmil's neuro, who she is supposed to have an apt with on Monday. I told them that I do not think we can safely get her to the appt...even with an ambulette. Just getting her in the wheel chair is a struggle...I shutter to think about getting her in and out of ambulette, into and out of the building, up in the elevator...you get the picture. The woman at the dr office said that she will leave a message for the dr. It seems that they have a homebound service. Don't know what that means or if it is any good but at least it would be something. I will post again when I find out more details.
Have to agree with Dreamer, look into hospice/palliative care. You may be surprised, DMIL may very well qualify for these services. I also thought hospice was just "end-of-life" care when I was caring for my Mother with ALZ, but after multiple people recommended it and I actually started it, I wished I hadn't waited. They can do so much to help - we had nurse visits weekly to monitor/treat medical issues, social worker visits every couple weeks, hospice physician visits as needed, and nurse-aide two to three times a week to help with physical care/hygiene, etc. Even had spiritual care advisor visits every 2-3 weeks to help address those needs. It is definitely not just "end-of-life" care and ALZ (especially later stage) is a qualifying diagnosis (at least here in Ohio).
Good luck and God bless you and grant you His Grace - you are in a terribly difficult situation but are obviously a loving DIL and deserve it.
Thank you, Thank you, thank you to all you wonderful people here! What great ideas and food to think on. You are all so right about hospice but I also thought that we had to be much closer to the end for them to come in and help. But I spoke to her neurologist yesterday after work and we spoke candidly about how long does she estimate given all the info that I was giving her. She said we had we have 6 months! Wow! That got my attention....I thought this might drag on for years yet. She also recommended hospice. What a great idea! There is one that comes out of a hospital right down the road from my in laws house. This would be ideal if she need to go to an in hospital kinda hospice....if/when we could not handle her at home anymore. I have a call out to them now. I hope that their extra involvement will lighten the load for everyone.
I will continue to keep everyone posted on our progress as I can see how this might help others in my same situation.
Update on my updates. Things seem to definitely breaking and in ways I was never really prepared for. We got another call from my dfil last night at about 9 pm that he and the aide could not get dmil in the bed from the wheel chair. This has been happening more and more recently as it seems dmil's legs don't "work" anymore. Fortunately, we live about 5-10 mins away so we can just race right over. Dh and the aide got my dmil in the bed with just a minimum of problems. The "good" part was I got to speak to our aide and she does know how to use a Hoyer lift. I have started the process with hospice in hopes of getting a lift ASAP. It seems that once a problem presents itself my dmil's abilities decline so rapidly that I can not get throught the "system" to get whatever item they need before she is out the other side and no longer needs said item. For example, a commode"...she was moving well enough that she was still using the toilet but I was hoping to get her a commode....but I have to get a script for Dr and they wait a couple of weeks for the process to go through. Well, I can tell you by that time she will not need a commode anymore.
I think the thing that is catching us all by surprise is the rapid rate a t which my dmil is declinging. Just a couple of days ago she was fine feeding herself but yesterday she could not really do it (ie find her mouth while holding food). She seems to be forgetting how to chew. This is just in a day or two. My dfil had to hand feed her some yesterday and I said that is going to continue. I think I always thought that the terrible part of this disease is that it moves so slow but we are finding the exact opposite. It is moving at a very fast speed. I can't move fast enough to keep up wit hall the new needs that she is presenting with. My only hope is that hospice will come "online" rapidly" and help speed things up and help. This change in rate of decline has been going on for about 6 months but every day seems to accelerate.
I have faxed hospice all my dmil's info as well as my POA and Healthcare proxy hoping to streamline some of the paperwork. I am going to call them first thing this morning to be sure that the process is underway.
I can totally relate to where you’re coming
from. My mother declined really fast and
eventually was also immobile and wasn’t eating. We got hospice/palliative care
in here once that started. My mother passed away 9 days after hospice came into
the picture. We were amazed at how fast
it happened but we also know that it was a God send for her. They’re great
because they managed her pain, changed her, gave her sponge baths and they
understand this stage. I can’t say
enough about how much they helped us. I
hope you get some of that relief quickly.
oh skittles412...thanks you so much for your supportive reply. I was totally under the impression that this disease moved at a glacial pace so thought we had sooooo much time. But since entering stage 6 we have been on the fast track downward. I had no idea that it could go down so fast. I feel like I am on tenderhooks waiting for hospice to call me back. At this point I am guessing that we will be waiting till Monday for an evaluation. Everything seems to take so long. This one has to get this paperwork from that one, etc. Meanwhile my dfil is trying to keep his head above water. I so hope he does not hurt himself....before we can get things in place. But then again she is moving so fast that once I get things "settled" she is already past the point when we needed help with whatever.
This disease always seems to keep you guessing....<sigh>
This is my first excursion onto the message boards. I feel for you and your family, Your dfil needs rest, and more help. My mom is in a SNF due to immobility. I have asked if she would come live with me (with help from aides), but she says no -- at 91 and 5 years in the facility, she is understandably afraid of the change, and concerned for me. She only communicates with nods and occasional words, but I understand. The thing is, I spend about 7 hours with her each day. There are so many of those "little things" you mentioned that will never, ever be addressed in the vast majority of institutional facilities. That and a number of other things related to quality of life would improve if she was at home with me, but the physical burden would be tougher on me. So I am leaving her where she is, as she wishes. Hospice has recently come on board too and that is giving me some comfort -- people outside the facility to add extra eyes, and provide some emotional and spiritual support (which the facility puts forth only meager - and I mean meager - effort ).
Because I have investigated having my mom move in with me, and because I have seen the care she receives at the "warehouse for the aged" -- I highly recommend getting a lift for your dmil ASAP.
Some accessories to explore: TOMI Turn and Lavin Lift Straps (if she is incontinent).
Best of luck to you in finding the best solution.