mekelly

Well, we have lots of snow here so maybe I should try that too! When I am sick I tned to cry when questioned which actually makes people back off. It s when I am physically strone but emotionally spent that I get angry. I agree that it is not usually productive with family or close frineds ( though it can actually do wonders with the phone company, the hospital administrator). Hope you feel better.

So sorry to hear of the difficultiues. Is Larry on any anti-depressant medication? He sounds very angry and frustrated and depressed. And who could blame him- or you for that matter- for having those reactions. I think that depression can make the stroke survivor unwilling to try therapy. It can become a huge control issue. If he is not on any meds, you may want to talk to his primary care doctor about it. Unfortunately, you also have to decide what YOU are willing to put up with and where you are willing to draw the lines. You cannot physically force him but you can tell him the consequences-- but first, you need to figure out what the consiequnces really are for you and him. It is his life, but his unwillingness to try to get better has a huge impact on you. As a caregiver, you are (imho) entitled to decide what you are willing to accept and what you are not. My mother has- on occasion- refused certain kinds of therapy and some of it I am willing to accept unhappily, and some of it I am not. She ultimately refused to work on the therapy that might help her read. We decided that there were no consequences for that. I think it would make her life better, but it breaks her heart to struggle and fail and so she has decided for now to give up. I wish she wouldn't and hope that she will change her rmind-- but ultimately it impacts her more than us, and I am not willing to impose consequences for it. With respect to physical therapy, we have a TENS unit and use it with stretching. If she is unwilling, we try and talk her into it. When that does not work, I will let her get away with one day of not doing it. More than that and the consequence is that I have left the room and pretty much refused to deal with her. No company, no backrubs, no special treats until we get the therapy done. I go in the other room and cry because I feel so mean BUT I do it. I do not want her muscles to atrophy or her to become even more dependant. I am sure some people will say that this is not appropriate and that I am treating her like a child but frankly when rationality doesn't work - you use what does. She does want to get better ( and is on an anti-depressant) so this has generally worked. The consequences for not going to the doctor, or refusing to eat or shower or being difficult to the paid caregiver, have also been made clear. If she cannot get adequate care at home, she will have to go back to the nursing home. Period. She gets to pick the days but there have to be 3 showers a week unless she is sick. She can help pick out the food but she has to eat. We try to schedule outpatient therapy, and doctors appointments when it works best for her-- but she has to go. She is still dealing with incontinence- and that is okay I will happily change her for the next twenty years- but she has to agree to be put on the toilet to try a few times a day. If she refuses these very rational things for more than a day or so we talk about getting her back in a snf. Again, all of this is much easier because she is verbal (and 130 pounds- so we could physically make her if we had to) but the emotional impact and the control stuff is the same. She can choose to give up and that is absolutely her right-- and if she makes that choice I will still love her BUT I will choose not to take care of her. These are all questions of balance. What she is willing to do impacts what I am willing to do. I am willing to make a large part of my life taking care of her, but only if she is willing to do the things that make it possible. I would put her back in the SNF (and then cry for three mnths straight) if she stopped working with us. She understands that and is willing to try. With respect to the family backing off - it happens. One of my Mom's sisters- who she was exceptionally close to- has visited exactly twice in the the 15 months since the stroke; her brother once. Most of her friends have disappeared. It is hard and depressing and frustrating to be with someone who is badly hurt by a stroke- and many people don't want the burden. It is easier to just disappear. I have definately damaged relationships - probably irreparably- because of my anger at family and friends who have not been willing to step up. But every once in a while somebody surprises me with their kindness and grace and reminds me that I am lucky to be whole and healthy, and to still have my mother in my life. I try to hold onto those things. I hope you can too. Hoping that things get better, Mary

I think that sometimes profound grief takes time to hit you. First, you are shocked and then taking care of things, and then you just feel numb. When my Dad died my mother barely cried for the first few months. She had been taking care of my dad who was ill with cancer for several months- and had locked down her emotions so that she could cope. When he passed away- they were still locked down. When we asked her about crying- she said no- that if she started she did not think that she would ever stop. She was angry and sad but not grief stricken in the sense that we would have expected. It really took about two months for the grief to break through the control. Then she cried at everything. I remember sitting next to her at a concert about two months after he passed and they were playing "I'll remember you at all of the old familiar places", and looking over seeing her crying silently. We ended up having to leave, and I just sat with my arms around her in the parking lot while she sobbed. If you have been the person who had to take care of everything, who did not have time for the sad, afraid, I'm so alone emotions and just stuffed them down, it may take some time for them to bubble back up. I'm not sure that there is anything that you can do -- although I find that music does push my grief buttons faster then anything else. You are my sunshine ( my fathers song for me) or I hope you'll dance by Trisha Yeadwood and I'm sobbing for 20 minutes. After my Mom's stroke I couldn't listen to the radio for fear I would hear Allison Krause (Ghost in this House). If you really want to try to break through a glass of wine, a dark room and the slow romantic songs you danced to when you were first in love would likely do it. But if it does not- give yourself a break-- sometimes you spend so long holding tight to control, that it can be difficult to let go. It will happen.

I am so glad you found a good aide and that you have reached a decision on what to do. It is so hard to know what is right but it sounds like you are both at peace with the idea so that is a good start. In terms of things you may need. These are things we got in no particular order: ramps for any steps (even a single step can be a hazard and they sell 1/2 inch to 2 inch attachable ramps;- also measure all of the doorways- we needed to take one of the doors off to make it wheelchair accessible; wheelchair; hospital bed hospital bed sheets- at least two sets those square bed pads they use on the sheets for accidents- these are necessary to help turn and position Larry on the bed. We found that the cloth ones were much better than the disposable ones that tore under Mom's 105 pounds! You will want at least two. tv with remote for bedroom; cd player with remote for bedroom good quality battery operated baby monitors. Not electric- you want to abe able to carry them with you through the house battery recharger and rechargeable batteries (truly shocking how many of these you go through if the monitor is on 24 hours) plastic basins for bed baths a lot more cheap washcloths than you have or think you will ever need to use- the packages of 12 or 24 are great. You really do need 3-4 for a good bed bath and you are not going to want to do laundry every single day! hand held shower nozzle for giving showers (make sure it is long enough for you to use) seat for shower grab bars for shower and toilet thing to make the toilet seat taller ( I have no idea what this is called but they have them at any medical supply place) sippy cups if he has trouble holding cups straws ( often easier to drink with one than to tip the head back) pill dispenser ( most aides can take the pills out of the dispenser but are not allowed to take them out of the bottles ) pill cutter if he takes any 1/2 pills depends and wipes if incontinence is an issue some kind of a&d or other ointment ( we use Balmex) if incontinence is an issue and to avoid bedsores. Something that is odorless is less humiliating for him. lotion for dry skin I am not sure why but we use a lot of this plastic disposable gloves- the aides are trained to wear them whenever they touch the patient ( these and the depends are cheaper to order in bulk online once you figure out what you like); recliner with hand held remote to operate-- pricy so you may want to wait on that. We have one so my Mom doesn't need to sit in the wheelchair all of the time and she can relax in the living room with family cushion for the wheelchair if he will spend a fair amount of time in it to avoid bedsores; roll up table (like they have in the nursing home) to use by the bed or with the wheelchair to keep stuff on; List of recipes and like/dislikes for the aide to use with Larry- especially if he has difficulty communicating; several laminated emergency contact number lists -- one by the phone, one in the kitchen, one in larry's room.... a medical history in case of an emergency when you are out- pertinent surgeries, allergies.... We keep one on the fridge and another over the phone. If the aide does not drive, an ongoing shopping list. and a place to keep it. ( you might also consider ordering groceries via peapod or something like that-- one less errand for you- although you will still end up going to the store a few times a week); a delivery account with a pharmacy if Larry is on a fair amount of meds and OTC stuff.... It is hard to get to the pharmacy on top of everything else. placemats to keep the plates from sliding while he is feeding himself if this is an issue depending on how neat an eater he currently is -- something to keep his clothes clean when he feeds himself. Mom was humilated by bibs ( and who could blame her) so we have a few different aprons that she can wear if we are eating something hard like soup (she had previously lost the use of her right hand, and the stroke affected the left so eating can be frustrating and messy). a rocker knife so he can cut his own food a plastic wipeable one month calendar (do you know what I am talking about- you can get them at any staples or office depot and write on them in marker, and than wipe them off for the next month) to put in Larry's room. You can write the doctors appointments, pt dates, any planned visitors.... so he, you and the aide all know what is going to happen-- I think it can be really hard to keep a sense of what day it is when you are pretty much homebound and this helped my Mom a lot. It also helps us keep our schedule straight-- and keeps her involved; easy to open (and I do mean easy- try doing it with your non-master hand) plastic containers for Larry to keep snacks, treats in. There is nothing that makes you feel more helpless than to want a cough drop in the middle of the night and have to call for it, or to want some dried fruit during the day and to feel that you are bothering someone; a few things for Larry to keep handy on his bedside tray or wheel chair tray -- that he can use himself- kleenex, chapstick, treats like gorp or sunflower seeds; small photo albums, or pt stuff like putty... The idea is for him to have things handy that he can do on his own. During the day my Mom has her phone, her remote, kleenex, blistex, gorp, juice, her laminated list of phone numbers, her copy of her schedule,her monitor, and a hand strengthener.... At night she gets the remote for her book on CD in case she can't sleep, hard candies, kleenex, the monitor to call for help, and the control to adjust the bed.... This way she has the independance for at least some of the things she knows she will need, and there is a sense of security involved in knowing that she can do these things for herself. You and Larry will figure out what makes sense for him but it is nice to start thinking about having a few things available. Finally, you might want to fix up a special place for the aide to keep her things that is out of your way and gives her some privacy. A place in the fridge, a place for magazines.... I know she will be working but there swill be a fair amount of down time so it makes sense to try to make her feel at home. I am surre I am forgetting some stuff and that you won't need all of this but.... GOOD LUCK!

I don't think that the SNF can just send him home- but this is primarily an insurance issue. He should get 100 days on medicare and on most plans. They can send him home early if he no longer needs skilled care but I do not think that is going to happen soon. If he needs skilled care and he has time left I do not think they are permitted to discharge him against your wishes (unless he is dangerous or a behavioral problem- something like that). Call your insurance and ask. Whether he is better off at home is a judgment call. We had my Mom in for the full period it was covered because of the progress that she was making in therapy BUT she was okay with that. Not thrilled, but okay. She knew that the plan was for her to come home eventually, and frankly she was a little afraid of being home with an aide. The SNF was at least a known factor. There are pros and cons of both staying at the SNF and going home. There will be less therapy and less interaction at home but more time with you. Less hands on medical care-- but a lot more actual caregiving. Now that you have had some time to think things through and come up with a plan (it will be imperfect and you will have forgotten stuff but it is a plan all the same) it is a tough and personal decision. I know it is hard to communicate with Larry but a big part of the equation needs to be what he thinks is right for him right now. I think that one of the hardest things as a family member and caregiver is to bear in mind that this is not our life. If I want my Mom to be my Mom and not just somebody I help take care of-- I have to treat her - whenever possible- like a thoughtful adult who makes good decisions. She is sometimes impulsive and can get confused - but when she thinks things through her decisions are rational. They may not always be what I would like (which would be to wrap her up in cotton so that she is never hurt again)-- but they are reasonable, and it is her life so her decisions matter. This is even more important for you because Larry is your husband. You do not want to be just his caretaker - but his partner. If he is capable of understanding and letting you know his thoughts- I think his input has to be a critical factor. Talk to him about the pros and cons about coming home now versus waiting a month or two and give him time to think about it. Glad you had a nice visit!

Charlene, with respect to the arm - ask if electrical stimulation might help: the e-stim and the stretching helped my Mom a lot ( her leg unfortunately did not come back at all) so she is the opposite of you. With respect to feeling useless, you might try to talk with your husband about ways to pick up small tasks by doing in steps. The classes sound l like agreat idea. I think it is perfectly normal to feel sad and drustrated BUT as a family member and part-time caretaker of a stroke survivor who is very dependant I can tell you that am very happy that my Mom is still here- and that a lot of what I get from her : love, understanding.... was not impacted by the stroke.