Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthorJan K
    • CommentTimeMay 8th 2017
    DH and I have been dealing with this disease for a very long time. (We're now in our 15th year since diagnosis.) We have talked in-depth about possible medical issues that might come up. Because of these past conversations, I thought that I was pretty well covered if decisions had to be made.

    Well, it turns out that I'm not. To make a long story short, it looks very likely that DH has cancer. We met with the surgeon last week to see what the options are. (DH had already seen a doctor, and had several scans and a biopsy. I've done numerous hours of detailed medical research online, which verified everything we have been told so far.) This first surgery would last an hour and a half, and if it is definitely cancer, an even longer and more complicated surgery would follow, with other treatment after that.

    It would seem that one's first inclination when finding out that a spouse might have cancer is to attack it with everything possible. But on the other hand, DH is an elderly person with dementia. Even the process of going through the surgery could change him immediately and irrevocably. I think we've all heard of older people, especially if they have dementia, having a permanent severe decline after surgery. I have been able to talk to DH about this, and he is more afraid of the mental decline than he is of cancer. If the surgery negatively impacts him, which seems quite likely, then whatever quality of life he currently has would be over as of that day. On the other hand, cancer that is not treated will become very difficult and painful to deal with.

    The surgeon was very dismissive about the dangers of a mental decline. He said that their medical practice operates on people with dementia all the time. When we went to DH's family doctor, though, he was very serious. He said he sees this kind of decline after surgery all the time. He said that the surgeon doesn't see what happens after the surgery. The family doctor does.

    One of the many things that terrifies me about this is that I know these caregiving years have used up any reserves that need to be available for meeting a crisis like this. For a long time, it's seemed like it was all I could do to put one foot in front of another and manage to keep food on the table and bills paid and most of the house shoveled out to a manageable level. There is nowhere left inside to reach down and get more resources for dealing with something like this. Nearly a decade and a half of caregiving has depleted me to a level I didn't think was possible to get to and still survive.

    I feel like I volunteered to give blood once, and it was okay. But before I could recover completely, there was another emergency need, so I gave blood again. But this time it wasn't okay. And this happened over and over, to the point that my face is the color of chalk, and I've been trying to crawl away and hide so I can rest and recover just a little. But someone is chasing me, screaming "We just need a little bit more! Just a little bit more! It's a matter of life or death! Come back!" But if I come back, it will be the end of me. There is no more blood I can give and not die, myself.

    Okay, I know that was way too much information, but it's how I feel. I have "given blood" over and over and over, and there is nothing left. Certainly there's nothing left to meet a need of this magnitude. But here we are.

    I would appreciate any ideas, advice, or encouragement anyone has to give. Thank you.
    I don't know what stage of dementia your Dh is in, but my feeling is that if he is in later stages I would at least get another opinion, and probably not do the surgery. Hospice is very good at taking care of pain. At least the one I used were not afraid of using medication to address pain. My heart is with you. I know the feeling of being completely burned out and I didn't have anything like that to deal with.
    How old is your husband, what stage of dementia is he in, and do you know what his wishes would be if he were able to make his own decisions? Does he have a living will or did he discuss these kind of issues with you before he became demented? How invasive and uncomfortable are these surgeries likely to be, and what is the prognosis with and without surgery? When you feel up to it, Jan, can you give us a little more information? I'm wondering if it is worth it to put him through a lot of misery when the end with Alzheimers is inevitable anyway. Is anyone talking about Hospice?
    • CommentAuthorCO2*
    • CommentTimeMay 8th 2017
    JanK. My heart goes out to you with yet another difficult decision. My mother just passed from cancer. She did not have dementia but they did a CT scan and found what "looked like cancer" with spots on the liver and lungs and a "mass" on her leg. They wanted us to do a biopsy but a nurse friend of mine advised me not to put her through this. My mother was 94. We did not and she went directly onto hospice. They controlled her pain very well and she lived life until about 2 weeks before her passing. She lived for 5 months after the diagnosis and the cause of death was sarcoma which my doctor told me is an aggressive form of cancer. She had a dNR and did not want aggressive measures. All you can do is try to go by your husband's wishes before he had dementia. I feel that performing aggressive measures if it is terminal only prolongs the agony and takes away quality of life for the time that they have left. I will be praying for you.
    • CommentAuthormyrtle*
    • CommentTimeMay 8th 2017
    Jan K, I really sympathize with all you have gone through, especially in the last year. You are really tapped out.

    I'm also shocked at the surgeon's dismissive words. Medical researchers have studied cognitive impairment in elderly people after surgery for years, although I don't know if they have established the cause or extent of it. Maybe some of our members in the medical fields can point you to current information. I'm thinking that if you want a second opinion, you should go to an oncologist who specializes in whatever kind of cancer they think your husband might have. In my experience, surgeons are just technicians.

    I think you're right to focus on your husband's quality of life. If I were in your place, I would assume there might be some cognitive loss. Some other things to consider might be:

    -- How invasive this surgery is and how long your husband would be under anesthesia? (The second surgery sounds particularly grueling.)
    -- The success rate for the proposed surgery - if it's a long shot, why subject your husband to it?
    -- What kind of the pain, discomfort, and fear/anxiety would your husband be likely to suffer as a result of the surgery?
    -- How old is your husband, what is his health condition and how advanced is his dementia?
    -- If your husband does not have the surgery, are there other treatments that would make the cancer less painful and difficult to deal with?

    Please let us know how you are doing with this decisions. I will definitely keep you in my thoughts.
    • CommentTimeMay 8th 2017 edited
    Everyone has given you valuable feedback, and I'll only add that I go along with what your husband's family doctor says. He will be your best support throughout this whole time, and he will be there with you all the way. He will be concerned about you, too, and you need an advocate. Hospice will be another source of help and comfort for you both. Keeping you in my heart and prayers.
    • CommentAuthorWolf
    • CommentTimeMay 8th 2017
    "my face is the color of chalk, and I've been trying to crawl away and hide so I can rest and recover just a little. But someone is chasing me, screaming "We just need a little bit more! Just a little bit more! It's a matter of life or death! Come back!" But if I come back, it will be the end of me. There is no more blood I can give and not die, myself"

    You're wrong. That isn't too much information. That's why the rope is here. Here. Hold on and we'll help hold you up.

    I was there. I remember what you just said because I was there. I know this place. You're not going to die. But this is rough so hold on.
    • CommentAuthorMim
    • CommentTimeMay 8th 2017
    Well, Jan timely your post is. I am facing this with Dan. He is 82, probably about early late stage (or maybe late middle stage, I really can't label it!). He has bladder cancer, has had two surgeries, the first one removed a kidney stone & scraped bladder tissue for a biopsy. The second surgery was to scrape the bladder of as much cancer as could be seen. It is an aggressive cancer, has already entered the muscle around the bladder. He has been scheduled 3 times for a PT scan, has had all three scans canceled due to high sugar readings (not sure what is going on there). Well, today I called & canceled further appointments, opted out of radiation treatments. It has not been an easy decision, I have felt so torn....pretty much like a real louse. Intellectually, I know it's the right thing to do, but the heart is another matter :(

    At this point, he seems comfortable enough as far as we can tell...he doesn't seem to register pain or discomfort if there is any. He's eating, is still mobile (way too mobile, almost 24 hours a day of constant pacing & walking the halls!). It isn't much of a life for him, but he doesn't complain. I just want him to be able to see the sunshine, enjoy a Wendy's Frosty, pet a therapy dog for as long as he can. Whatever quality of life in a facility he has, let him have it while he can. He knows my face, although he refers to me as his sister many times, he smiles at almost everybody (although he thinks everyone else if goofy!). I just want him to enter his next transition as comfortably as possible...I have talked to the nursing home about palliative care, hospice, etc., as he progresses, I will be with him more & more. He's 20 miles away, so I'm not there every day, maybe only about twice a week. The saving grace in that is that he doesn't have any concept of time or season.

    The urologist sees & treats urinary issues....the radiologist treats cancers. They don't treat or see the whole person or situation. They are called to heal. We are called to deal with this the best way we can, with love, with compassion, with common sense (difficult when emotions get in the way) & kindness. Helping them as they travel the road to their next destination (wherever you believe that is) is probably the kindest thing we can do for them. Either way, Dan is terminal... cancer or Alzheimers. It's a very hard concept to absorb for me, but this is what happens in life.

    I hope I haven't rambled too much, I tend to do that sometimes. Just realize you are not alone in this particular situation, I am right there with you.
    • CommentAuthorCharlotte
    • CommentTimeMay 8th 2017
    A few years ago we had a discussion on anesthetics - which were absolutely horrible and those that were not as bad. Most anesthetics are designed to cause memory loss - they don't want you to remember the surgery. Problem is for some the memory loss continues. I know a lady who has short term memory problems from her colonoscopy where they used Versed. When I had my hysterectomy, colonoscopy and shoulder surgery I told the anesthesiologist which ones I did not want used and they laughed at me when I gave the reason.The one for the shoulder surgery was the worst - he actually made fun of me.

    The other problem, especially with long surgeries, is the brain cools down which they say kills brain cells. These can play havoc with an already compromised brain like our spouses have. These are two concerns with dementia and anesthetics I have read about.

    If my husband got cancer I would not treat it. We talked about it early on and we both agreed why prolong things, especially if treatment would cause a mental decline. His doctor knows it which is why they probably don't do a real good physical on him. In fact, I pray something will take him before the last stages of Alzheimer's. I was so happy my sister did not have to endure the end stages of VaD, and pray the same for my husband. I even doubt if I was diagnosed with cancer again I would not seek treatment.

    Tough place to be, but like you said - you are exhausted, have no more to give.
    • CommentAuthorMoon*
    • CommentTimeMay 8th 2017
    Jan K,

    I am so sorry you have this additional problem to face. I don't know what type of anesthesia my husband had, but over a five year period (64-69 yrs. old)
    he had an abdominal surgery, as well as several procedures to expand his esophagus. After each, I noticed extreme losses in memory and vocabulary and
    other declines in his daily routines. Also,shortly after two of the procedures he had a seizure.

    I will keep you in my prayers. My only suggestion is to make the decision you would want your husband to make if your roles were reversed.
    • CommentAuthorxox
    • CommentTimeMay 9th 2017
    Surgeons generally suggest surgery. They tend to be people with personalities that bias them towards action (which is why they became surgeons).

    When my father was 82 he was diagnosed with CHF. The doctor who performed the angiogram recommended medication only treatment to regulate heart beat. He felt that angioplasty would either kill my father or leave him disabled due to kidney problems (the dye used in angiogram and angioplasty is hard on the kidneys) and his being fat (which made the process take longer than average, meaning more dye is used). Another option was surgery, opening the veins and cleaning them out. He felt that this also was likely to kill my father or leave him disabled plus there was no evidence that this would extend my father's life. This doctor pointed out that my father lived longer than most people who shared his birth year and it was impossible to state how much longer he would live.

    This doctor warned us that the surgeon would recommend the surgery. He stated that surgeons want to take action and it is just their attitude, nothing nefarious.

    Some anesthetics are recommended for people with dementia to lessen the odds of additional cognitive loss.

    We went with the medicine based approach. My father lived years longer than predicted. I didn't realize it then but he was in early stages of dementia so anything which would have caused more cognitive loss would have lowered his quality of life.
    • CommentAuthorLindylou*
    • CommentTimeMay 10th 2017
    Jan K

    I’ve spent the last day thinking about you, thinking about what to say. Because I don’t know you well. But I do know this disease. And I feel I do know the person I married.

    I want you to think about the person you married and the person you stood beside when you took your vows. I want you to think about what you were promising each other.

    The man you married, at the moment he married you, wanted the absolute best for you. You saw it in his eyes. You saw it in the way he held you. He can’t think it now because of this disease called dementia. He certainly can’t say it to you at this point. But one thing is for sure, he did not want himself or this disease called dementia to suck the life out of you. He did not.

    We are all engaged in a war we cannot win. If we let it, dementia will destroy two just as easily as one. Please, Jan, do not let that happen.

    We often think what would our partner want regarding the decisions we make regarding care. That I have felt is somewhat simplistic because the additional question needs to be asked - what would our partner want for us. And a third question also needs to be asked, what do we ourselves need and want because we are an important part of this equation.

    I would echo the others who have suggested you talk with people from hospice. They are trained to see the greater picture. The surgeon not so much. And you need that information in crafting a way forward for yourself and your husband. And whatever your decision, know, Jan, that many people on this website have you in their thoughts and prayers.
    • CommentAuthorBev*
    • CommentTimeMay 10th 2017
    I've gone through this with my husband. I would not let him have the surgery if I were you. As most of the others here have said, seek out hospice help and listen to your primary care doctor, he knows your husband best. When my husband had heart surgery he awoke from the surgery completely disoriented, hallucinating, etc. I believe it accelerated the dementia. Of course, he really had to have that surgery then and we didn't yet have the diagnosis of dementia but something was going on. At this later stage in your husband's case, again, I would not do it.
    • CommentAuthorJan K
    • CommentTimeMay 10th 2017
    Thank you for all the very kind and thoughtful responses.

    DH and I were able to talk about this a little, and I feel like he does understand what the choices are. He does not want to risk the surgery and possibly lose what mental ability he has left. Very shortly after we talked, he didn't remember the medical issue, the trip to the surgeon and the family doctor, or our discussion about all of it. The good thing about that is that he certainly doesn't feel any fear about what might happen in the future.

    The fact that I was able to ask him what he wanted does help. And the fact that he didn't remember any of it means that he's already declining fast enough. I'm finding some peace about the decision for him not to have surgery. He's already dealing with several other physical issues besides dementia, and the prognosis doesn't look good no matter which decision we make. But without the surgery, he can maintain what little quality of life he has now.

    I want you all to know how much your kind words helped. I appreciate it more than I can possibly say.
    I haven't commented on here in a long time. My h started with mild cognitive impairment in 2007 and we are still muddling along with very slow progression. I am dreading next week. He has torn his rotator cuff completely loose and was told the only hope for regaining much use of his right arm was total joint replacement. Immediately that's what he wanted. I mentioned my concern for side effects of anesthesia and maybe losing a lot of mental function but he's determined so Monday morning next week... These physical health problems are very problematic.
    • CommentTimeMay 30th 2017 edited
    I think that the unrelenting pain he would have from not having the surgery would be as as hard on his mental functioning as an anesthetic, especially since it's what he wants.
    Charlotte will have a clearer take on this. She will see both sides.
    • CommentAuthorCharlotte
    • CommentTimeMay 30th 2017

    I would question the replacement. Remember surgeons like to operate. I would discuss it with his primary, neurologist or whoever is his main doctor. Get a second opinion. Recovery is not easy. It takes a lot of therapy and work both at home daily (I did my exercises 3 times a day on non PT days) and PT 2-3 times a week for 6 months or longer. Mine was Twice a week starting week 3 for 6 months. The pain for so bad about weeks 8 to 15 I wanted to quit. I slept little at night getting woke up by pain. I was not given hydrocodone anymore and ibuprofen only lasted a couple hours. I would have to get up, move my arm some, ice, then try to go back to sleep. Sleep deprivation definitely affected my patience and tolerance towards my husband who has AD. Then when we started ROM behind my back, again the pain was so bad I cried, sleepless nights, I wanted to quip.

    I had my surgery October 6th. I do have full range of motion, which I am grateful for, but still have pain. Doctor says it can take another 6 months to a year for the pain to go away. But then it may not. I still have to do exercises or it will stiffen up. I still have to be aware of the weight of what I pick up. A lot has to do with some of the continued pain might be tendinitis or torn bicep.
    • CommentAuthorCharlotte
    • CommentTimeMay 30th 2017
    I am home now so will finish.

    Keep in mind: the first few weeks he will be in a sling. Some have a recliner or rent one and sleep in it the first few weeks. You can get an ice machine that stays on when sitting and rotates cold water through or you have to ice to keep swelling down. I used ice and slept in my bed from night one in the sling until I was able to get out after 6 weeks. But, I still would use the sling at night for another week or so. You have to either sleep on your back with the arm supported or on the non-injured side keeping your arm on your side. If it falls/slides down your front it is painful. I still am not able to sleep on my left side that I had the surgery on. I still ice it when I overuse it. I still get woke up in the early morning hours (usually around 4 or 5am) with pain. I actually have more pain than pre-surgery but I do have full ROM which I am thankful for.

    One has to be very aware of what they do with their arm. You can use your hand while in the sling but the arm must be kept in the sling that goes over your shoulder and around your waist to keep from lifting it out. Showering is a whole other problem. You have to be careful not to lift your arm up the first few weeks. I had to bend over and let my arm just hang down to wash my armpit. Drying was a whole other challenge. You will have to help him dry cause I don't think he will be able to figure it out. I would throw the towel over my back then rub against the wall to dry my back. Don't every thing with one hand and arm is hard when you aren't use to it.

    I could go on and on but I think you get the picture. My husband was no help - he couldn't remember and never asked why I was in a sling. He would not even help close the car door!

    They can do a nerve block on the shoulder (which can cause nerve damage in itself) then light sedation, but you still run the risk. There is a thread here about the different anesthetics - which is safe. When I had my hysterectomy, colonoscopy and shoulder surgery I told them which ones they could not use. The first two anesthesiologist were fine with my thinking, the shoulder surgery anesthesiologist laughed at me and my reasoning. I already have to be the 'memory' for two, I didn't want to purposely chance making that more difficult.

    The rotator cuff is actually three tendons. The shoulder replacement would not probably be his biggest challenge. All the pain is stretching those tendons but being careful not to tear them again. I had one dissoluble screw put in. It takes time for the tendons to adhere to the bone again and each other. That is why everything has to be done so slowly.

    Again, I would slow down and get a second opinion or even third. This is not easy surgery to recover from. It is long and takes dedication from the person to rehab their shoulder. Surgeons like to operate. They don't consider the ability of the patient to follow post-op instructions. I am betting the surgeon is leaving that to you. It will add so much stress to your life, stress I personally would not want to take on.

    My husband's doctors know my feelings if he should need surgery or medical treatments. A few years ago the dentist wanted to replace his bridge. I told him no way was I putting thousands of dollars into a bridge for someone who is dying.
    • CommentAuthorOnewife
    • CommentTimeJun 15th 2017
    Charlotte I don't know how you edured the surgery, pain, rehab and taking care of your Dh. I read your post and your always fixing something. Your amazing!
    • CommentAuthorCharlotte
    • CommentTimeJun 15th 2017
    Believe me, it is all crashing now. I wrote a letter to my ex-DIl telling her what has been going on and why I just don't feel like talking. Writing it I realized how withdrawn and tired I am. My body aches all over. I have been out of Magnesium for the last month and wondered if that is why I hurt more than normal. I finally bought some yesterday and will see after a few days if that helps with pain. I was trying swimming to strengthen my shoulder/arm but swimming makes my lower back hurt worse so am stopping that. The podiatrist had given me inserts to help with my big toes that both have arthritis. They are basically generic with pads on the ball of the foot part. Don't know if they will help because it messed up my right leg, which is the leg that has the hip go out which causes my knee and then ankle. I was in so much pain I had to ice my ankle and hip. I sent the doctor a not so nice email about paying $49 for generic inserts that were suppose to help, not cripple me. Didn't phase him a bit! My chiropractor said they should have he me stand on a machine that will tell them how I stand before giving me any. I am thinking about wearing the show with the insert on my left leg that didn't hurt and the right without it.

    I went to the audiology the other day regarding the vertigo I have when laying flat or turning my head left. He put some machine behind my left ear and shook which seems to have helped.

    So emotionally I am not doing well either. Between physical pain, not sleeping well (mainly because I am a dreamer which often leaves me more tired than before I went to bed), and dealing with husband - you all know the exhaustion.
    Charlotte, it might not be a good idea to use an insert in one shoe and not the other because then one leg will be longer and it will really throw everything out of kilter. Ask your chiropractor or doctor before you do it. Also, if the pool is deep enough, could you stand up in the water and exercise your shoulder? That might be a question to ask the PT.

    Sorry to hear that you are achy and tired. You certainly have reason to be and it makes coping with the stress even more difficult.
    • CommentAuthorMim
    • CommentTimeJun 15th 2017
    Charlotte, you've always seemed like the energizer just keep going & going. Maybe something is trying to tell you to slow down (of course I don't know how you would do that!). I don't know what your exact situation is, but have you considered placing your husband? I'm sure you've already looked into it though. I wish I had some good advice or ideas for you. Not much help, I know, but know you're in my thoughts.
    • CommentAuthorCharlotte
    • CommentTimeJun 15th 2017
    You all know when it is Medicaid you are depending on, they have standards for placement. He does not meet them yet.
    • CommentAuthorCO2*
    • CommentTimeJun 16th 2017
    For whatever it is worth, my husband got on Medicaid but only after he was placed. I had to self-pay for a while.
    • CommentAuthorCharlotte
    • CommentTimeJun 16th 2017
    I could never afford self pay. We have no assets and live on his social security.
    • CommentAuthorMim
    • CommentTimeJun 17th 2017 edited
    Charlotte, we have been in the same situation. Social security only income, no stocks, bonds, assets of any kind. Because of my ill health I simply had to have him placed...our VA here in town was right on the ball, took care of things immediately (the social worker really went to bat for us). They have a "contract" with 3 facilities here locally. One was no way, the next had a waiting list (that's the one I really wanted), but the third took him, the VA paid for the first month, the Medicaid was applied for immediately, but of course didn't kick in for a couple of months. The nursing home worked with me, our Anthem Senior Advantage took care of a few smaller things in the meantime. After Medicaid was approved, I owed for about one & a half months of care. As things progressed, the case was examined more closely & I was excused from having to pay that! It took a lot of paperwork, appointments & phone calls (I thought I was ready "for the home" at that point!), but somehow things seem to have fallen into place...until something else comes along. I guess it's different state to state. I'm in Ohio, so I don't know how things would be worked out where you live. Just offering our situation, hopefully some encouragment. Keep on Keepin' on, girl.

    I should have said no stocks, pensions, CD's, IRA's, investments....nothing. In some twisted way, maybe that made things easier for us, I don't know. I have cashed in our pitiful life insurance policies (& I mean pitiful), but it paid for our final expenses, termite control, a downpayment on a car for me (a necessity). Keeping the house maintained is going to be a killer for me, but you won't have that worry with the RV....unless of course, you plan to keep living in it
    • CommentAuthormyrtle*
    • CommentTimeJun 18th 2017
    Charlotte, You seem to be stuck in a place that leaves you no room to move. When the VA and Medicaid came through for Mim, she was looking at cancer surgery that would leave her unable to care for her husband for a while. But your increasing medical problems probably would not present such a clear-cut emergency to them, so I guess they are going to force you to wait until you drop in your tracks! And what will happen if your aches and pains prevent you from maintaining the RV?

    I wonder if the VA would provide you with some respite care. Their VA Community Based Services page says that respite care is available to vets who need help with bathing, dressing, fixing meals or taking medicines or whose caregivers are experiencing burdens. I realize that the last VA rep you talked to was incompetent but I wonder if there is someone else in that office you can talk to.
    • CommentAuthorCharlotte
    • CommentTimeJun 18th 2017
    I have been approved for 30 days, 6 hrs each of year of in home respite. Problem is: where to go? I have no family to go visit that I can get to and back in 6 hours. Yes, I can go to the store but I could maybe use an hour for that. Go hiking - possible but I would have to figure out where I would go, which hill to hike up (which I am not in shape for and rattlesnakes are out now). I really need to buy me a bike. My arthritic big toes would not hurt like with walking and I could be gone a few hours on it - at least until the weather gets hot which it is finally this week -97. Problem is for the respite I have to call the VA to request it and they will call Total Care with approval who will schedule someone. Big problem -= I have to plan at least 3 weeks in advance. I am not good at planning that far in advance - I have to be in the mood to take off.

    I will have to just figure a way out to hold on and keep my sanity. We all know that challenge.
    • CommentAuthorMim
    • CommentTimeJun 19th 2017
    Myrtle, I realize my situation was different than Charlotte's. Maybe I shouldn't have written what I did, kind of sounds like I'm rubbing it in....not my intention at all. Made it sound like it was a piece of cake... it wasn't/isn't. Hope I didn't offend or upset you, Charlotte.
    • CommentAuthorCharlotte
    • CommentTimeJun 20th 2017
    No Mim, you wrote fine. I didn't take anything negative. I was happy for you that it worked out when you had enough stress facing cancer and chemo and what goes along with it. I think that is why a big part of me wanted the breast biopsy to come back malignant so it would facilitate him being placed sooner.
    • CommentAuthormyrtle*
    • CommentTimeJun 20th 2017
    Mim, I did not take anything negative from it, either. I was focusing on Charlotte's particular circumstances and trying to figure out how she could wangle some services for her husband.

    Charlotte, I can see what you mean about wishing you had to be hospitalized. Also, having someone else involved brings its own problems and sometimes it's just not worth it. When the aide came, I did not go anywhere. I was much too exhausted. If I had had to go somewhere, I would probably have rented a room in a hot-sheet motel for a couple of hours so I could get some rest. Maybe read a novel or something. As is was, I stayed at home and did office work or just crashed. The 30-visit limit was a pain in the neck, since I would rather have had more visits that lasted only a few hours each. But that is not an option.

    I ended up sending the aide and my husband out to places of interest. Since I live in a part of the county that was prosperous during the industrial revolution, there are a variety of museums (firearms, industrial, aviation, historical) as well as a regional exposition center that regularly hosts shows (dog, horse, motorcycle, guns, crafts, you name it). So there were plenty of places to send them. I don't know if you have places like that. Sometimes they just did errands for me.