AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hello, Mary -- I appreciate being able to speak to you since you were a caregiver just as I am. I have been caring for my Mother-In-Law in our home for almost (10) years -- my Husband passed away in December 2005 and I continue to care for her. I have her on several Nursing Home Waiting Lists but her number will not come up for some time -- and I want to be able to care for her in our home as long as possible. (I do know about the law of coming out of a hospital and going to the top of a nursing home list). We have a "history" and she was NEVER the "proverbial" Mother-In-Law -- ALWAYS so dear and loving to me. Even though I am like an "alien" to her (and her to me) -- and it "cuts me to the heart" -- I still want to honor the person she was. (I sound a lot calmer than I am -- as you know, the care IS physically and mentally exhausting). She has another son but his situation would not allow for her care as well as mine. I believe she has had the disease (beginning with the hellucinations) since approximately the Fall of 1994 -- (14) years now. She cared for my Father-In-Law who had Alzheimers until we had to step in because of becoming aware of his violence -- we believe he hurt her and she developed bi-lateral subdural hemotomas for which she had surgery after she came to live with us -- this, and her caregiving for her husband, seemed to send her on her "downhill spiral." With regard to her care -- I just got a lift chair which has helped so much -- and she has a hospital bed. She can walk a short distance to her transporter on her walker with our help -- but she cannot even stand by herself for a second anymore -- doesn't seem to be able to place her feet correctly. I think she knows that I am someone who cares for her but don't think she knows much more than that. She is both incontinent of bladder and bowel -- has been for most of the (10) years. She does "sundown" but we seem to be able to even deal with that more lately because she cannot focus on anything for very long. She has almost no hearing ability -- and stares at me much of the time I'm talking (yelling) to her -- and I NEVER know if she cannot hear me or cannot answer me because of the disease. Whenever I ask her a question, she ALWAYS answers, "I don't know." (I'm sure that is the truth, too!) I am having to feed her more and more myself but she is still eating and drinking her Ensure which is helping to at least maintain her weight. She is able to swallow her food quite well but water really makes her choke. I am fortunate -- she has her own money and insurance -- however, I would be able to care for her even if she did not. I also have help for (3) days of the week, every other Sunday for church, and every other Friday. So there are MANY blessings. I "Googled" for information tonight about end stages of this disease -- to know what to expect -- like so many caregivers and loved ones want to know so they can be prepared -- and found your name. I appreciated your "first-hand" knowledge and wanted to ask you some questions. (I know I have gone on for a long time to now ask this -- but would so appreciate a reply -- just wanted to get you into "context" as it were). She is DEFINITELY in your Stage 7 -- but do you have ANY idea how much time I'll be able to care for her in my home yet? She seems to have "broken the records" for the professional projections. Also, she is having problems with phelgm -- she has episodes where I have to work with her for a couple of hours to cough it up and out. We went to an ENT and it is NOT an infection of her sinuses, etc. The doctor put her on Robulin to reduce the secretions -- this has helped somewhat but NOT completely. The attacks also seem to happen at times when we've recently given her the Zoloft medication for depression -- (which she has been on for 10 years and not given her any problems before). I realize you are not a doctor -- but since the doctor really doesn't know the answer either and after doing the "rule-outs," is just "trying things," I thought it might be something associated with the Lewy Disease and that you may have experienced it in your caregiving. It drives me "crazy" to NOT understand something -- and this has me stymied! Thank you SO MUCH for your caring heart -- to want to help others understand this devastating disease -- and for your reply -- and any additional information/Links you might want to share with me. Love, Joanne :)
Answer Hi Joanne, sorry it took me so long to get back to you - something went funny with your question, and I had to get some technical help from the behind the scenes crew to be able to respond (I could see the question but it wouldn't let me answer!).
So your poor, dear mother in law - both Lewy Body and some sort of traumatic head injury. She's had the double whammy then, poor lady.
As I know you've probably been told know, subdural hematomas can happen even from very minor head injuries, especially in the elderly. These go unnoticed for many days to many weeks, and are sometimes called "chronic" subdural hematomas. During a subdural hematoma, tiny veins between the surface of the brain and its outer covering (the dura) stretch and tear, allowing blood to collect. In the elderly, the veins are often already stretched and fragile because of brain atrophy (shrinkage). The surgery to drain the blood or remove the clot may have also harmed her brain. Some people also lose ground from the anesthesia alone, irrespective of the type of surgery involved.
Sounds very much like she is developing dysphagia - which is a fancy word for problems with swallowing. It's part of the loss of coordination and muscular control that happens in later dementia - and a dead give away is problems with thin liquids, such as water, and also with saliva and phlem. Its common to see choking, gagging, coughing, wheezing after eating, drooling, even respiratory infections from aspirating drinks or food. Dysphagia goes with many dementias, as well with as the Parkinson's symptoms that accompany Lewy Body.
One approach is adding thickeners to make food or drinks into a consistency ranging from a heavy syrup to mashed potato or pudding. The food becomes dense and cohesive, which eliminates the problem of thin pureed food or drink running down the throat and into the lungs.
Before you try them, its worth talking to the doctor about the situation. A swallowing study may be warranted, which is sometimes covered by Medicare, to identify the appropriate thickener. There are many products on the market - a common brand is Thick-It. Typically, you can ask your local pharmacist or medical supply place about the brands they can purchase for you by the case (which is the way to go because its less expensive). By the way - is she taking the Zoloft in liquid form?
You asked how long you can look after her at home - that is a tough question. Everyone has their limit on the caregiving front- it is so individual. However, I know you know that what comes next for her is going to involve heavier and heavier care, as she becomes more and more physically helpless and less responsive. It is also going to be very hard emotionally, when she no longer has any appreciation of where she is, who she is with, and stops talking entirely. She's already taken 14 years to get to this point - the end of her journey may still be years away, particularly if her general health is good, and thus she has no complicating issues that might mercifully carry her away sooner. It can be very bleak when it goes on and there seems no resolution - and having been through the end stages with my mother in law, no matter how much you love them, its like running a marathon that just goes on and on, and it does wear you down physically and emotionally.
You have been a wonderful daughter in law, and you've looked after her during the time when it may have meant something to her. You have given her your best - you've done everything to give her a good quality of life, to support her, honor her, and give her dignity. And you've sacrificed to do that. Even with the great support you have from various sources, an ever increasing chunk of your life has gone into suspension while you have been occupied with caregiving. I do think its okay to want some time for yourself. You do have to consider yourself in this whole equation. You do deserve to be able to enjoy your life, look after yourself, to be able to rebuild and rediscover some joys you may have mothballed - particularly since you are now widowed, and facing a very different future than you imagined before your husband passed away. The way I look at this is, that your job is to love her and look out for her - just that - because that is the one part of the caregiving only you can do. You know her, and you can bring little bright spots of pleasure and enrichment to her life - that doesn't mean you have to do the caregiving, or that the caregiving has to take place in your home.
You have a great spirit and attitude, and she's lucky to have you in her corner. I don't want you to feel guilty, but if I were you, next time her name comes up for a placement where you can feel comfortable with her care, take it - if for no other reason, than to give yourself a rest and a holiday. Tell yourself it is a trial, and then take yourself off for some pampering - take a trip, visit a friend or family member in another town. Just concentrate on you. Give it at least a month or two. If at the end of that, you want to carry on with her back at home, you have that option, and you've at least accomplished two things - you've given yourself a well deserved break from stress and worry, and you've tried on the idea of her being looked after full time by others so you know it is possible. After all, if you were to become ill for any reason, she would likely have to be placed in the first facility with an open bed - and probably by someone other than you, rather than you being able to choose the one you think is best.
You've been looking after people for a very long time, so it might be very hard to even think about letting go, even for a month or two, but give yourself permission to contemplate the idea. Caregiving can get to be like being a piece of wood in one of those stress testing machines - the load sneaks up on you so gradually, you can be under huge pressure and just not realize how much. You don't want to wait until you get to the point of crisis - you have to really think about the limits now, before you want to totally admit you might be getting close. I'm willing to bet if you were to place her, you will be lost for a few days, then you'll sleep for a week, and then....you'll start to look around you, and realize you deserve a little happiness and a little life all on your own terms, not just defined by caregiving.
You are a sweetheart, and I wish there was something I could say to really help you in this situation. You are lucky to have so much help, but you must not let yourself get run down by telling yourself that having her at home is the only way to be a good caregiver, and a good and loving daughter in law.
