<p>Hi all. Just noticed this thread again and was sorry to see what many have been dealing with. My dad too has anemia for which they cannot pinpoint the cause. He has also been diagnosed with dementia which when I look back seems to have been going on for a while. I’ve tried to do as much reading as I can to try to understand what to expect but his behavior does not fit the mold of some of what I have read. There is no emotional change other than possibly becoming more pleasant which, knowing my father, is a god send. He is due to see his doctor at the end of the month and I am hoping to get more information then. I agree with the sentiment that science has prolonged life but it is not a quality of life. It is so difficult to watch.</p>
<p>My mother also has had anemia for the last few years and the doctors don’t know why.</p>
<p>Many thanks to all of you for your condolences. The last four days have been a sleepless blur, but we had a beautiful funeral today for my dad, with a full church of family and friends. His was a life well-lived and you can’t ask for much more than that.</p>
<p>ECmotherx2, I sympathize with all you are going through. I was fortunate that my dad did not suffer from dementia or Alzheimers, but the never-ending worries over new health problems and the frequent doctor and hospital visits do take a toll. I am glad you have your son to help you.</p>
<p>anxiousmommy, I had to smile at your comment that “there is no other change other than possibly becoming more pleasant.” After my dad’s stroke two years ago, he gradually became more and more sweet-tempered as his cognitive abilities diminished. That was actually a delight during a hard time and we had a lot of laughs over his newfound way of saying the most affectionate things to my mom.</p>
<p>Re: anemia. My mom has chronic anemia caused by the blood vessels in her digestive track constantly leaking. It’s an “orphan” syndrome so it took a while to be diagnosed. She sees a hematologist 1x/month who monitors her blood levels. At the beginning she was having blood transfusions, then they did iron transfusions, then they moved her to a high dose iron supplement which caused havoc with her digestion. Now she gets a concentrated iron transfusion every 2-3 months; her dr. tries to stay ahead of the curve so her levels don’t get too low. </p>
<p>Before we moved & she started seeing her current doc’s, it wasn’t being managed well. After she had her stroke, the numb doc at the hospital put her on a blood thinner regimen even though the stroke was caused by a bleed, not a clot, and even though I was insisting that her other condition was a contraindication. Needless to say, she ended up being readmitted to the hospital because she’d almost bled out. For those of your parents who are on various meds, double check that they’re not contributing to the anemia.</p>
<p>^ Similar case with my dad. His anemia was caused by ulcerations in the esophagus (no pain, though, not even a sore throat), which were cauterized a couple of times to slow the bleeding. At home, he was on iron pills, but since even slow bleeding eventually catches up with you, his last trip to the hospital included four units of blood.</p>
<p>My advice to those of you who are balancing meds and dealing with sometimes less-than-knowledgeable doctors: If at all possible, find a doctor who specializes in geriatric medicine. We did that two years ago and the level of attention and understanding increased dramatically. Maybe that was already suggested upthread, but I came late to this party. :)</p>
<p>I’m so glad I found this thread! It was therapeutic just reading it. I just spent an exhausting 4 days with my dad as he had surgery near my home. He is young, just 79, but with beginning short term memory loss and a very strong willed nature. </p>
<p>He really needs someone at doctors appointments as he can’t remember what was said after he leaves. However, he makes it very difficult to help him. As an example, he questioned the entire procedure up until they gave him anesthesia. It was only day surgery and he requested a local, and couldn’t understand why he needed to change his clothes, have a bunch of tests, iv’s … as he was only having a local. Afterwards, he wanted all the tubes removed immediately, didn’t want to fill his pain med prescription and insisted on getting out of his wheelchair half way back to his hotel room, connected to the hospital. And today he drove himself home, with my mom next to him in the car. </p>
<p>I was as patience as I could be as I know he hates medical procedures and is a control freak. But yesterday I reached my limit and then told him I couldn’t participate in stupid behavior and left him and my mom to their own devices. He has called and apologized and thanked me for helping him, but it still didn’t change his behavior. </p>
<p>I’m trying to set healthy boundaries, but it’s hard. Does anyone else have this problem? How do you help someone who needs it, but doesn’t want it.</p>
<p>Ativan</p>
<p>.5mg before surgery or any other procedures.</p>
<p>For you, not your dad</p>
<p>laserp my dad had a very hard time giving up driving. He was on morphine, could not walk, had advanced Parkinson’s and pancreatic cancer and used a rider to get around. He wanted (very completely and thoroughly convinced it would be ok) to drive me a half hour on the highway to the airport. !!!</p>
<p>I put my foot down. Quite literally stamped and yelled and made it clear that there was just no way he was to drive anyone anywhere. We hired a limo service for me. </p>
<p>Earlier in our time together I had to demand the car keys after he’d had one too many gin drinks at the restaurant. He wanted to drive me and the kids (his grandkids) and my mom. I had to stamp and cry and demand and command and stand very firm for a few rounds of this nonsense before he recognized I was serious. And. He was not a nutty guy. This behavior puzzled and frightened me. I begged both of them not to drive and tried to convey they could kill a child or someone’s mom. I had to say very hard things. They finally got it and got a helper to drive them.</p>
<p>One of my grateful things now that they have both passed on is there were no car accidents. /sigh. I can imagine it will be very very difficult to give up the car keys when my time comes. I hope I will have learned…</p>
<p>I have discovered how difficult role reversal can be on both parties. At my aunt’s neuro visit just prior to her last hospitalization, I told the PA that I was going to leave with a prescription for Ativan and Celexa, it didn’t quite matter whether it was for me or for my aunt!</p>
<p>EC^^^^^^</p>
<p>I once said the same thing in an appointment with my dad. Mr. Grouchy was protesting that he didn’t need the Celexa, nothing wrong with him. I told the doc the same thing - SOMEBODY was going to go on Celexa, either him or me. </p>
<p>In all seriousness, since I have been responsible for my folks, I now take 10 mg. of Ramipril for high blood pressure and I have a prescription for occasional use of Ativan. I use that sparingly, saving it for either all day events with one of the oldsters or a ER visit. My mom, on the other hand, has been able to reduce her BP meds since she lives in assisted living and dad is in skilled nursing. </p>
<p>This is not for the faint of heart.</p>
<p>I may talk with my MD about the Ativan. I come home so stressed, I am not sleeping well and actually fractured a tooth! My mother and aunt’s blood pressure is lower than mine. I used to do yoga and need to make more time for myself. Today was the first day since September that I have not spent with either my aunt, mother or working on their meds or paper work. It felt so good just walking around Costco, I know, pretty sad.</p>
<p>EC - I am not a shopper by nature but I have found that sometimes I will go to the mall, wander around, almost to decompress. I’m anonymous, nobody needs me, and I can just go about, being distracted by meaningless stuff. I rarely buy anything when I do this - I think I just need to be around people who don’t want a blasted thing from me. </p>
<p>What’s funny, however, is invariably, some older person will stop and ask me a question about something. I must just send out some kind of vibe…</p>
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<p>ECmother, I can relate!!</p>
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<p>Do you know what kind of dementia he has? My father has frontal lobe dementia. It has made him much more pleasant. He was always an angry guy but now he is mellow. He actually thanks my mother for taking care of him. Amazing. Frontal lobe dementia can make people very passive (it can also have the opposite effect). </p>
<p>My new crisis: my mother (the healthy parent) hurt herself while cleaning and is almost totally incapacitated. The doctor says it’s a muscle tear and will heal. But meanwhile she can’t really walk or do much of anything. Big problem because she is the sole caretaker for my father, who can’t take care of himself at all. He is in diapers and needs a lot of assistance with hygiene. My mother lives in denial-land and thinks everything will be fine in a few days; meanwhile I guess my father is supposed to sit around in his own waste. My brother went to their apartment (lucky for me, he lives near them) and said it is filthy. I told my mother someone is going to have to come in and help with my father and she actually agreed. Visiting Nurses of Phila. can send someone, but it’s going to take a few days to get that going. I think I have to figure out how to get an aide in there on an emergency basis, even if I have to pay for it myself out of pocket.</p>
<p>Meanwhile my MIL, who was so resistant to having an aide, absolutely loved having someone to talk to and boss around. Now her services are coming to an end and we have to figure out what to do next. Lucky for me, my husband seems to have decided to take over dealing with this.</p>
<p>I do not know what kind of dementia my dad has, but if I had to guess I would think it has to do with having been an alcoholic for more than 60 years. We too are now on a fairly regular regimen of getting blood levels checked and if need be, a transfusion. My dad has a home health aide who I understand he has actually become attached to. Blows my mind. This is not the same abusive drunk I grew up with. I believe that everything happens for a reason and as exhausting as all of this is, it has at least brought me to a place of acceptance. Perhaps I will eventually get to forgiveness. Not to be nosy, but how do your parents “afford” the assisted living/nursing homes? Do you liquidate everything or have they been good planners? I for one am going to make plans for myself so my kids will not have to deal with all of this.</p>
<p>
The short answer is long term care insurance. The longer answer isn’t quite that simple.</p>
<p>My Mom has/will gone through all stages … day care, in-home care, assisted living, and probably nursing home pretty soon. </p>
<p>When my Mom needed someone to be with her all the time but my Dad needed some breaks we started day care; she spent 3-4 hours at day care 3 or 4 times week. After covering the initial deductible LTC paid the full bill. That said 10-15 hours of day care a week was not really that expensive and my parents could have paid this out of picket for quite awhile. </p>
<p>Then besides day care my parents needed more help at home and we brought someone from visiting nurses in a few hours a week. Again LTC paid but at 10-15 hours a week this wasn’t too bad to do for awhile without the insurance. One other thought … early in the process my Mom physical health was fine we were just covering for dimentia … so we didn’t need a nurse and could hire aids which are much cheaper.</p>
<p>Currently my Mom lives in assisted living … and LTC paid about 2/3rds when she started and about 1/2 now (as her level of care has increased). So the insurance is essentially doubling the length of time she can stay in assisted living.</p>
<p>For us this got really expensive when my Mom needed full-time care beyond the family … then all the options were pretty expensive and could not have been pursued for long without the LTC insurance. But even with the insurance money is still a worry. The LTC insurance should run about 5 years for my Mom and we’re into year 3 … and starting to worry about year 6 and beyond if we get that far.</p>
<p>One big challenge with my parents was after lives as savers and having a nice nest egg trying to get them to spend any of it is a real struggle. Trying to get them to pay for a cab is tough enough never mind having someone to come and clean once a week.</p>
<p>^^^</p>
<p>You are not being nosy - I am blown away by the cost of these services. </p>
<p>My parents were not wealthy. My dad rose up the ranks at Armstrong and retired with a nice monthly pension and superb health care for him and my mom. They saved regularly and several years ago moved into a Continuing Care Retirement Community with a lifecare plan. They paid a hefty down payment for an apartment and a high monthly rent - however, their rent was locked in (not completely, but almost) and so they are now paying about the same amount even though one is in skilled nursing and the other is in assisted living. </p>
<p>They never would be able to afford this if they were coming in off the street for this level of care.</p>
<p>Agree that the CCRC with Lifecare can be a real blessing. The key, at least for my mom, was to time it right. Stay at home as long as possible, but then get into the CCRC while you are still healthy enough to qualify for the locked-in monthly price. My in-laws won’t even think of going that way, so we’ll be in for a ride.</p>
<p>Simpkin, can you call your local hospice? If a family member is declared terminal or has experienced a 20% weight loss, they will help out. We are paying for 24 hour live in care for my mom using her retirement funds, pension and social security. We should be able to cover this expense for another 2 years before it would become necessary to apply for medicaid. The home care is far less than the cost of a nursing home and her care is excellent, but medicaid will not cover home care. Years ago, we tried to convince her to purchase a long term care policy and she refused to pay the high premium.</p>
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<p>The cost of a full-time, live-in caregiver is astronomical. When it became apparent that was what my dad would need, one of my siblings bought the house that my parents live in. My folks continued to live there and used the proceeds of the sale to pay for my dad’s caregiver. </p>
<p>We were lucky we had a sibling in a position to do that for them. But even that is not a bottomless source of income. Much of it has been paid out over the past couple of years. I don’t know what we’ll do when my mom is in need of similar care. She has very little income and the rest of us aren’t much help (financially speaking). If she requires a health aide and the house sale money is gone, I imagine she would end up in a Medicaid-funded nursing home. Is that right? Have any of you had to go that route? It sounds so awful to me.</p>