RLT

Here may be a surprise response as I am one of those many who drifted away from Strokenet. Even still, certain blogs are delivered to my email regularly including yours, Sue. I want to add my thank you to Steve. The support and especially the education I received here changed my life. My husband stroked nearly 16 years ago. He had fewer abilities than a new born then but though hard work he was able to walk, talk and care for himself when left alone for short periods of time. Overtime he began declining and experienced caregivers (especially you Sue and Ann) diagnosed his vascular dementia when the doctors could not see it. Dick spent the end of his life in a nursing home. This week it will have been four years since his death. Dick's post stroke life mirrored Ray's in many ways only in fewer years. In August of 2018, my father had a stroke. I diagnosed it over the phone. His stroke was much milder but his decline more rapid. He passed away in July last years. I had no time to turn to StrokeNet during those days. Overnight I became caregiver to not only my father but my mother as well. It meant selling both homes and moving across the state line. Still the education I aquired from the faithful here helped me through those times. I still talk about you, Sue. My mother loves to hear updates from Australia. So a great big THANK YOU to you. You done good. Ruth

The decision that this was not a safe discharge was made by the people coordinating MFP. They actually brought three levels of management to our last meeting to prop up this decision. They claim that it is their licenses on the line with this discharge. They are also telling me that getting Dick readmitted into long-term care would be extremely difficult because new laws are making it so. In their opinion, I guess, I should hang on to the long-term care benefits that Dick has because they will not be available in the future. A very ugly picture is arising. Since the changes in healthcare have been taking place, the benefits to seniors has taken a substantial hit. I have noticed that my parents are unable to get certain prescriptions covered by Medicaid part D. One of drugs was Valium which is relatively cheap. My father was in the hospital again this past week. The day he was discharged they had him sign a form explaining that he was being build not as inpatient but observation which is outpatient! When I got him home he had a bill waiting for an earlier ER visit that was only partially covered when it has always been covered before. He does have a secondary insurance but they apparently did not pick up the slack. It would appear that the government no longer wants to provide the care promised to our seniors. Ruth

Holidays, graduations, out of town guests, kids coming, kids going, meetings, appointments…! April and May hit like a tornado and things have yet to stop spinning. As the saying goes.. the hurrieder I go the behinder I get. I didn’t even look at my computer for a month and a half and I only got a few peeks a week the rest of the time. Then – nothing! I have only one thing on schedule for the rest of this month. Now I am wondering what to do next. I have shared my journey since last fall to make arrangements to bring my husband home using the Money Follows the Person incentive program. Dick’s discharge date was to be July 11. But that is not going to happen. Our state changed who was in charge of that program in the middle of the process so there was a lot of confusion. The seemed to be willing to offer a lot up front but I waited and waited to get a commitment of how much in home assistance we would receive. In our final meeting a whole new set of people comprised those in attendance. I had all my ducks in a row with doctor appointments, VA papers filed out, home visits and PT/OT evals completed. The MFP had packets of papers prepared which explained all the benefits that Dick would receive. My minimum of in home assistance was met. It took over an hour to go through all the paperwork. THEN they tell me that they don’t think it is a safe discharge because I am the only one who is assuming full care of Dick! Why they had not been more forthcoming with that info is beyond me or anyone else who knows about it can understand. This has left me very disgusted and downright angry. I figure that it is my business and responsibility to determine whether or not Dick comes home. I have been very cautious through this whole process to not jump into something that I cannot handle. To have some strangers randomly make that decision is disturbing. Especially so when I have done my homework and determined just what I would need help with so that it would be a safe arrangement for the both of us. I did challenge them about it. Their only answer is to have at least two more people to come to a meeting and agree to assume full responsibility for Dick. I do not want anyone else to have to assume that sort of responsibility for him. I have a support system in place to help me provide Dick’s care but I cannot imagine asking someone to assume my job. When I am angry I shut my mouth. I have taken the last couple of weeks to digest this and cool down before making a fuss. I don’t want to jump into a decision that I will be sorry for later. So here I am having made the decision to bring Dick home with assistance feeling extremely disappointed. I had even done some trial runs just to see how our days would work with him home. It was hard without help but I sure enjoyed having him with me. I had begun to rearrange things to clear a bedroom for Dick. I just don’t really know what to do now. It is still possible for me to bring Dick home of course. However, I will not have all the upfront things that MFP would have provided and possibly not as many in home assistance. When my kids were little we used to go camping every year. For the rest of the family this was vacation. For me it meant doing all the work I did everyday but made a little harder. In the same way having Dick in the nursing home does not relieve me of his care. Sometimes it is just a little harder. I still have to supervise his care and often I still have the heavy care as well. I do have more flexibility it is true. But I miss out on Dick’s company at home and I have learned to dread sitting in that place for several hours every day. There are tradeoffs. Dick is extremely disappointed. Then when he is in one of his confused states he nags me about when I am going to take him home. Through this process I tried very hard to keep Dick from knowing what was going on just so he wouldn’t be disappointed. But there were three different agencies sending people to evaluate him and everyone kept telling him he was going to go home. Of course I am the one he blames. He does not understand all the background work that goes into his care. In the meanwhile, Dick’s mental condition is still up and down. He has not followed the regular progression in his memory loss. They say that more resent memories are the first ones to go. That is not so with Dick. He remembers what things have taken place recently though he cannot seem to understand whether something was yesterday or several days ago. It is things like our wedding that he does not remember. He knows we are married but even looking at the pictures he does not remember the event. I am not sure that he remembers our motor homes even. I think the thing that bothers me the most is the feeling of no one else really understanding our situation. It is easy for family, friends and even professionals to come up with what they think is the easy solution. Unless you have been through all this it is impossible to really understand all the shades of grey. So just because someone else makes a decision for me I cannot just accept it. I can see the situation from more angles. In truth I do not believe there is a better choice for Dick’s care. Dick home or Dick in a nursing home – both choices have equal pros and cons. I now stand in limbo.

Congratulations, Sue, both on your birthday and new granddaughter. Adjusting to those quiet visits takes time. I find I run out of things to talk about and I must be careful what we discuss because there are topics that cause distress. I fall back on reading books. Dick cannot follow a difficult story line unless it is familiar to him. I am able to do J R R Tolkein books because we have read them before and he has watched the movies. But when I bring in new material children's books work better. I like Patricia St. John books because Dick seems to follow her stories well. Glad to see you are getting envolved in the activities that you enjoy so much. Ruth

Ruth, Dick too obsesses about things on the floor! He wants me to stop what I am doing to pick up a tiny speck. Drives me nuts! He also likes to direct my vacuuming. The other thing that Dick does is fuss about how the bed is made. I can only imagine that it is throwback to military days. I have learned to say "no" when I am busy. Eventually he gets over it! I again praise you for the commitment and energy you give to swimming. I love Fred's suggestion for the powder situation! Ruth

Debbie, I applaud your strength in letting Leo go. Bruce's saftey and your peace of mind have top priority and Leo just was not fitting the bill. The good news about having test come back with bad news is that you can now take steps to "fix" things. Please do take care of yourself so that the damage can be reversed and your back is strengthened. You may have to remind me to do this later but do put yourself first sometimes. It is far too easy for us to pour every ounce into our loved ones and neglect ourselves. Sounds like Bruce has earned some gold stars! My daughter brought a gold star balloon home the other day and I think Bruce could us one tied to his WC! Ruth

Ruth, I think that certain concepts are broken by stroke. Dick never has voluntarily exercised and unless I stand over him and force him he will not do anything with a therapist. After his heart attack in 1974 he drove himself to walk five miles a day then began running part of that! So, the drive used to be in him. He cannot grasp the improtance of exercise now and never will. A disclaimer here is necessary: his "never will" is now due to his dementia. There are some ways that you can get informal exercise though. With Dick it was putting on his socks. For months it was a daily fight with him. Once he had accomplished the task once, I knew that he could do it. So I began refusing to put his socks on. I would hand him his socks and walk away. At first it took him 30 minutes but over time he learned to do it quicker. But those 30 minutes meant that he was wiggling and struggling - translated stretching and exercise. The success with the socks instilled in me a stuborness to force Dick to do everything he could for himself. If he wanted it bad enough he eventually achieved it - like walking into the kitchen! Ruth

Kelly, Just reread what you wrote - you have gone way beyond the call of duty! What you are feeling is really false guilt. I think everyone who is a primary caregiver does this and that is why the first rule of caregiving is to take care of yourself. Personally I believe that you need to place your husband and children as I higher priority as well. Your mother is not likely to like the change and that is understandable because change is frightening especially when the individual cannot control it. In all relationships, people tend to lash out at the person that they are closest to because it is safest. Control is something our survivors are forced to give up and they will manipulate the areas that they can. It sounds like Mom is doing her best to manipulate you with a sense of neglect. Often the stroke damages a persons ability to empathize. They become the center of their own understanding and really have difficulty understanding another person's problems. So you have a complicated ball here. As you mother gets to know her caregivers and gets used to the new routine things will get better. My husband is now in a nursing home. Yesterday I did not get my usual welcome when I went in the room. Since he has aphasia it took a while for me to find out what is going on in his head. It soon surfaced that he was mad at me! I never figured out why. I have been doing this for over 7 years and have learned the quickest way for me to deal with this is to take a hard stand. He can be mad at me but I will not stick around while he does it. I told him that he should be thankful that I was there and I was doing my best to give him the best care possible. I also reminded him that he could stay mad at me but I would not stick around for it. Yesterday all it took was a walk around the perimeter of the nursing home and he changed his song. There have been times I have had to leave for the day. When he was home, it looked more like me going in my room and shutting the door for a while. This approach always means his anger/bad mood is short-lived AND I don't get mad in return and feed back into an unpleasant scene. I agree that treating her matter of factly for now is your best plan. If she doesn't kiss you, go ahead and kiss her. Ignore the things you can and don't stick around for her temper tantrums. You may well feel like a shmuck doing this so it is time to give yourself permission to have a life and to have some respect. Go ahead and treat yourself to something special as a reward for all that you have done! Ruth

Julie, Where do you get Larry's hearing aids? We would never be able to fit Dick for one at this point sadly but I take care of my parents too. Both really need them but look to me to initiate. Ruth

Glad to see that you back up and running, Sue. Ruth

Sue, In a very real way the change in your life when Ray had to move out of your home is as big as the change of stroke. If we cannot find other people who are at that same stage it is all too easy to feel isolated. I have yet to find a support group that addresses the new set of responsibilities and challenges that come with a spouse in a nusing facility. I found myself pulling inside myself. So, I assigned myself as an official shoulder to cry on. As other individual are admitted to Dick's nursing home I often find family members crying in the hallway. I have yet to have anyone turn down a hug! I guess that is what keeps me coming back to StrokeNet as well. I am sure that there will be other people who are looking for someone else who has all ready walked this path. There is a book out call "Creating Moments of Joy" I find that if I face each day trying to spread a moment of joy to a family member of resident I am the one that walks away with a jolt of joy. It doesn't change the situation, just my attitude. Ruth

Fred, You are an inspiration to all of us. Thanks for taking care of our soldiers too. It is a pet peeve of mine that our men give so much to us only to be forgotten. Dick served in the Korean War which they completely skip when teaching history these days. My girls have learned more about what our soldiers did in Korea from their many friends from Korea than they ever did in public schools. Ruth

Ruth, You are amazing! I am so much a spare of the moment type that I find it hard to stick to a schedule. You inspire me! Ruth

Should your wife have to be burdened with your limitations? In an ideal world, no. But that is also true for you. As a caregiver I believe that my husband and I are in this together. Sure I wish it would all go away but I NEVER want Dick to go away. Dealing with teens is NOT easy. Since your 16 year old is your wife's daughters I would let her handle it. You might want to establish some house rules with your wife and support her. But as a Mom I can say that I really get upset if anyone yells at my kids. I can yell or discipline but not my husband (step-dad as well). Silly I guess but Moms are crazy about their kids! Your wife does need extra encouragement and support though which you can work to give her. Ruth

Fred, I e-filed both federal and state for free this year. We do get a little back because at the end of last year someone must have pushed the wrong button and suddenly they started taking taxes out of Dick's pension. But still I put it off to the last week as well! Ruth

Nancy, I wish I had brilliant words of wisdom for you but I don't. I do really understand where you are coming from. My youngest girls were still in school when Dick stroked. These girs had always been the pride of his life. But a couple years post-stroke he began treating them horridly. I do know that when you feel badly, young people seem to suck the energy out of you just by being in the room. At first Dick would realize afterwards what he had done and appologize but that didn't go over well with the girls. It places us in a dreadful position caught between two generations whom we love. Of course the first thing I look for whenever Dick seems off is a UTI. The majority of the time that is the cause. Another thing to consider is that we all have times when we just feel off and want to crawl away and be left alone. Dan may just need some space. All of this is depressing. Even when we are not clinically depressed. I think there are times when most caregivers think that this is just no life to live. No, it doesn't make us suicidal or homicidal but it often reflects a belief that there is something better after death. There comes a time when some of us seriously do have to concider nursing homes. One of the first things to think about is just a respite time for a week or so. I don't know what is available to you but Dick is entitled to four weeks of respite a year through the VA. When the respite is for you I advise that you either not visit at all or limit it to maybe a couple visits. Hard I know but it is the best way to recharge you own batteries. My husband has been in a nursing home for two years. He has vascular dementia and his aggression towards the girls and my poor health were the main factors that mede this necessary. Everyone must determine for themselves when this is truely a viable course of action. It isn't easy having him there. You do tend to trade one set of responsibilities for another. You also do usually have at least the nights all to yourself. I am in the process of considering bringing Dick home now that our girls are gone most of the time. It is taking me a LONG time to fully make a decision. This too is not easy. I guess I would suggest that you give Dan a break and yourself a break before making any decisions. Likely you will feel different in a couple weeks. If you don't then start your research. Ruth

Debbie, I am glad that you are recognizing some of the extra demands you are placing on yourself. You are right in that it often takes someone else to help us see that. Do enjoy all your activities and friends but remember those breaks. Ruth

Fred, Thanks for reminding me not to get too bossy and "big for my britches". I know that Dick's ability to make choices is nothing compared to you but I still need to understand that his wants and desires are as valid as my own. Ruth

Meltdowns are really not that bad. I used to try to keep them from erupting but I finally realized that the bad part was the stuff before the meltdown and that rant or good cry was really a way of letting some steam out of the pressure cooker. After a meltdown I can move on. All those trips and forms and silly rules and demanding family do get us down. It is harder to do it on your own. And no, not all the problems disappear when you finally have help coming in. It seems that you just exchange one set of responsibilities with another. BUT I still think that getting help and getting BEFORE you can't pick yourself up again is essential. Ruth

I just love hearing good reports like this! Ruth

Feeling sad about not being able to accept this job is normal. I think anyone would feel disappointed at the reminder of lost dreams. As a spouse though, I would imagine that your wife while too is sad about the changes but more happy that she has you by her side. The dream has to change at least for a little while. You may be losing one dream but you are free to dream new dreams. Be sad for a little while then focus on something new and exciting. Ruth

Julie, Sounds like you have a full week. It is good to have time with all the kids and sometimes better to just have one or two at a time. I'm impressed by all the work Larry is doing. Today I caught Dick having his elbows on his chair armrests. His hands where enterlaced together except the little fingers which were pressed together and sticking up. I have not seen this position since before his stroke 7 years ago. Then at dinner he used both hands to pull apart and butter his own rolls. Dick's had was useless for at least three years. He now has so much brain damage yet he still is regaining physical skills. Just really saying, don't give up on Larry's hand. Ruth