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Dementia (and the fact shes 95 years old) are taking over a grandma I still love but don't really know anymore. She has lived with my aunt for 2 years, but was on her own still in her own house. Pretty Cool! Anyway, my mother her brother and his wife and the aunt she now lives with are all local and help out. Thank goodness! One sister lives 4 hours away and comes when she can. Here's the problem, taking care of someone weather it be terminal, age related, or whatever is by far the most emotional, physical, and non routine work ever! I have cared for cancer patients and spent nights (Sleepless) and understand to some extent what my aunt is going through. The difference is I went home whenever needed got refreshed then went back. My aunt, even with help, doesn't get that luxury. Often people tend to give opinions on how our care could be better(not from a professional) how were to stern, or my favorite, why are we laughing at her. Heres the deal, every person and situation is different and finding the groove that works for all caregivers involved can be hard but with support, compassion, and humor I find this to be the greatest job ever! My aunt is doing wonderful and yes, gets frustrated on the no sleep, asking same question over and over, or clean up every 2 second days but is a trooper. I might get a bit of her,leftover, (lets call it) outbursts but know its not personal. If people re not familiar with the down and dirty of how this type of care can be they tend to be very misled on what can or cant work and how and how not things should go. Humor is a tension breaker and a must for us. One of my cousins was very hurt and felt I was making fun of my grandmother, I tried to explain that when she comes up with an off the wall comment or makes a statement that was pulled out from who knows where and I continue on with her and by the end I had to make a comment that usually makes both us laugh, is not making fun of her. She did not choose for this to happen nor to have her mind taken over at times by a cruel disease. For those few short times when we get her back its awesome but more and more shes disappearing. Hard to see this happen! I understand from the outside looking in it looks easy and people must throw in their 2 cents, but for the most part i think most of us doing this type of care have a handle on things and if help is needed we surely will seek it! My admiration and thanks go to all of you who have decided home care is best for you and your loved one. I Thank my family, for all your love and support for grandma! I love you all so much!

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jet509, so sorry of the loss of your dad n especially when u left him in that suppose to be medically good hands. A lot of family members think we should be able to help n do it all n protecting too. However, in reality you can only do so for you are only human. We all make promises that we seem to know we can do it at the time but as time goes on some of us realize that we cannot do it all! It sounds like your mom could use a CNA Certified Nurse Assistance n they should be qualified to help with anything she is not physically or mentally able to do for herself that is if she is on Medicare or Medicaid. You can check on their websites. Of course, because of your past issue with your dad n I am so sorry that happen, but u need someone to come in n let u have a break or two. I would had thought that the hospice could do more than just sit around like a companionship? I would suggest contacting your local alz.org association n see if they can help assist you with some help n breath. Please keep us posted on how you n your mom are doing n vent away for it helps too.
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Scared, paranoia is a typical part of many kinds of dementia. I know you want to tiptoe around and not give him any reason to distrust you, and I don't blame you, but just know that if the paranoia progresses it is Not Your Fault. Really. For my husband that state of mind lasted only a few months, thank goodness! It was my least favorite symptom. I think it was a combination of drug therapy and the disease just moving on that got us out of that.

I was able to tell my husband where I was going when I went to support group. He was pleased that I would take the time to learn more about his disease so that I could support him better. But if that had bothered him I would have made something else up. Really. Do I mean I would actually lie to my beloved husband? Yup. You learn to do what you gotta do, for his sake and yours.

When we saw our neurologist while my husband was being tested a nurse always interviewed me, and gave her notes to the doctor. By the time we saw the doctor together he knew my perspective, and he phrased questions to allow me to agree or disagree with my husbands answers with the least friction. Since your visits are not set up this way I suggest that you write down your concerns and observations and email or fax to to clinic the day before you go. Your husband is not able to present a clear picture. This is Not Your Fault. Having a clear picture is important for the doctor in treating him.

I am so, so sorry you are in this dreadful position. You sound strong and resourceful. I'm betting you will do a wonderful job of caring for your husband.
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This is for Jet509 - I found out through a colleague (I am a grief coach for women whose partners are dying or have died) that people with dementia, women in particular, need a baby. She had difficulty finding one that was soft bodied and realistic but this "baby" calms her mom. She is in her 90's and she had 3 'husbands' in the alzheimer facility she lives in and she was pregnant from all 3. Perhaps getting her a 'baby' would help her as well.
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Scared, The sleepless nights, are they form the stress or because your husband is up wandering? My mom has done that and so we are up at night making sure she doesn't get into "trouble". Its almost non existent now since her mobility is less now however she goes through periods of not sleeping and calling for me and thinking she should be gotten up because she has been in bed for "SOOOOO" long (maybe an hour) I finally asked the doctor for something to help her stay asleep. Now for the most part we have that somewhat under control.

I know you would hate to"lie" to your husband but if you can get away and do the support group or go talk to his doctor by yourself and get those answers it would help you handle him better and feel more in control...though I do not ever really feel in control since the dementia rears its ugly head when we least expect it. That is something you eventually will come to accept and deal with even in a crowd. And find a way to laugh....the other day mom said her daughter's name was Shirley Temple.(I am her only daughter) I came out of her room and told my husband to just call me Shirley! Its sad sometimes because I miss the mother I used to know and sometimes if I don't giggle at the odd things she says or does...I would lose it myself.

Hope this help a little. I just found this site myself after dealing with my mom for the last 5-6 years. Its been awesome to find others that honestly understand!
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Well, here it is, another sleepless night. Got a whopping 2 hours tonight. Thought I'd come here and "talk" a while. Never heard the term showtiming, but it certainly describes what my husband does. The doctor seemed to recognize it, thank goodness. I know the doctor should hear things from my perspective, but it's very difficult to say anything in front of my husband without him getting angry or upset with me. I'm so afraid of losing his trust because he has become more and more suspicious of everyone and everything. I'd describe it as some sort of paranoia, but I'm not a medical person and no one else has mentioned it. Maybe all the testing they plan to do in the next couple of weeks will explain what this is. RE the support group: you may be right. I just thought it was odd that no one called me after 2 phone calls and over a week of time. There are others in the area, just not as convenient to go to. Then, too, I don't know what to tell my husband about where I'm going. He thinks anything like that...support groups, counseling, etc...is a sign of weakness and just a ploy to get attention or for the provider to make a living. I struggled with severe depression after my hysterectomy 20+ yrs ago. I went to a counselor for a while, but he said he wouldn't pay for it anymore because it wasn't doing any good. It's just his way. Always has been; always will. I just didn't realize that someday this attitude would hurt so much. It is what it is and with God's help...and places like this to "talk" things out, I will make it. Not sure what condition I'll be in at the end, but I will survive like the thousands of others who have/are/will deal with this and other medical situations. I know I"m not alone in reality, but it sure feels that way sometimes.
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If you have the means to move, move nearer to your sons! Family is more constant than former neighbors and your friends will soon age like you and your spouse and be occupied with their own needs. Nearly all of my 84 year old parents' friends have passed away or have dementia or disabilities of some kind now, so that would not have been a good solution.

Trust your children to do the right thing, after all, you raised them, didn't you? Asking for their help is not a call to weakness, it is a reach of caring, and allowing them to help you is a gift, not a burden. Think of how you feel when you are able to help others. It is the same for your kids as it is for you. Give them a chance. Tell them what you need and ask for their collective assistance. They will meet your expectations if you set them high enough.
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Scared, putting on a good show at the doctor's office (or when you have guests, etc) is called showtiming -- and it was given a name because it is so common! In early and even into moderate stage dementia the person can, with great effort, put on a good show for a limited period of time. That is one reason is it essential that the doctors hear the caregiver's version of events and behaviors as well as the patient's version.

About the support group -- keep in mind that these are generally run by volunteers and often they are in the midst of caregiving themselves. Be patient with them, and call again if you don't get a call back. A good one really is worth the effort of getting there.
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Thx to all for your comments and suggestions. I can't move back to our old place, but it's a good idea. I am still able to go to church on Sunday, and talking with people there helps a lot. I have looked into local support groups, but I couldn't get anyone to call me back from the place so I didn't go. The next few weeks are full of tests, etc, ordered by our new neurologist and appointments with the VA to try and get some help from there. For now, I vent here and to some trusted e-mail friends who offer what support they can via messages, etc. It helps. If I could only understand what happened a month ago to make this change so dramatically so suddenly. Someone mentioned that hindsight is always so clear...amen to that! I wish our former neurologist had talked to me and told me my husband's determination to move here might just be a result of a neuro-psychological disorder, I would have done things so differently. Unfortunately, my husband seems able to put on a good show for the doctor when we're there. I am hoping all the tests the new doctor ordered will tell us something so we better know how to treat this. In the meantime, I vent and pray and cry and hope that I can stand up to the pressure. Thank you all for sharing and caring. This site is a God-send.
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OH my gosh! I have seen and heard myself in almost every comment and the original post here. I am one of two children and care completely for my mother who is turning 96 on February 2nd. ( Next week) She has extremely poor eyesight and hearing and Dementia. She is now in a wheel chair and does almost nothing for herself.

Even though I do have some support with my husband and youngest daughter that is still at home....I too feel alone and not always understood. Unless you live it, NO ONE, truly understands the mental and physically toll. I would not do it any differently though. My mom did so very much for me growing up and she deserves to be with me and family. My brother lives 1.5 hours a way and is alot older than myself and has some health issues of his own. Although, really he has never been overly helpful. Even though travel may have become hard for him he and his wife do not even call to see how she is pretty much at all. They came to see her in July and has called once since then. In some respects I am glad she doesn't understand time and or ask about him often...how would I ever explain why there isn't even a call to say"How is mom doing? Tell her we love her and thinking about her." Yes, I am bitter about that but try everyday to let it go.

I also use humor and whatever else to get by. We are not laughing "at" our loved ones. We are surviving! And trying not to cry. I feel that dementia is one of the cruelest diseases there is.

I hope Scared finds some support. Many nursing home or communities also have respite care. Times when you can take some time off. And please find a way to take care of yourself because you can't care for your husband if you are not healthy. And talk to us anytime. I am new to this website but have already read many things that have helped me or inspired me to go on. Thank you to those that offer support, ideas, and just listen! Its priceless!
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yvonne- Thank you for your comments, complments, and understanding, I agree with you a hundred percent! I've been taking care of my Mom in our home for five years now and wouldnt have it any other way. My amazing husband helps me hoyer her to bed and change her everynight and I hired morning help but I am home 20/7 alone other than that . My siblings visit a handful of times for a couple of hours but won't help out and never did. Its ok, I have a clear conscience and all that matters is that mom gets the best care and attention possible. Thanks again...
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On the original post, thank you. You get it!
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I highly, highly recommend finding a local caregivers' support group. Even if you have to drive some distance to get there it is awesome to be able to talk to other people in similar circumstances, to ask questions, to hear how others handle things, to share what works for you, and to laugh at the crazy things the loved ones do.

This site is also a nice virtual support group. Keep coming here. But if at all possible find a local group, too.
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Moving back would be great, but hindsight is always great. Since this may not be an option for you - before you really need help - look into personal care agencies in your area. (Family and friends tend to disappear when really needed anyway. Whether it is a homemaker (household chores) companion, home health aide or whatever skill level you need - find out what is out there.
Having a companion sitter (tax deductible) for my husband has really helped. I work part-time. Now he looks forward to my coming home.
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My 85 yr old mother came to live with me about 3 yrs ago after my father died. Although he had his own problems, he took care of my mother. He went to the hospital for surgery for melonoma. He was told that he would be home in 3 days, but after many human errors and some that were blatant neglect or carelessness on the part of those trusted with his care, he died 2 months later. As you can see, I am still very bitter about this. He had told me once in the re-hab center, that it was my job to protect him. I feel that I failed him miserably. Anyway, I promised him that I would take good care of my mother, and I am really trying to do this. I would do it anyway. I love her so much. It is really hard sometimes. When she first came to live with me, she could use a walker or wheelchair and we could go out sometimes in the wheelchair accessable van. Now, she slips down in the wheelchair. Does anyone know how to keep her from slipping? I tried a belt, but that didn't help. She also didn't have dementia. She has since gotten alot worse, both physically and mentally. I have to use a lift to get her out of bed now and she has to use a bed pan and have baths in bed. Just in the last couple of months she has gotten dementia really bad. Sometimes she has horrible hallucinations. Her father raped her when she was a teenager. Although he died many years ago, she has thought that he was back. I have gotten some help through hospice for the last 6 months. The dr. put her on haloperidol for the hallucinations. It has helped some. At least the scarey ones have not happened so much. She did tell me the other day that she had twins, though. She said," I bet you didn't think that I could have a baby at 85, did you?" I thought that she would forget about the babies, but yesterday she asked for some milk and when I tried to give it to her, she looked at me like I was crazy, and said that it was for the babies-not her! I know what you mean, wonnejene, about laughing. Sometimes she says the funniest things. I have found that if I don't go along with it , she gets upset. I wish that I could go back 20 years. We used to have such fun together. But then, I think someday I will be wishing that I could go back to now, while I at least still have my mother with me. It is hard to not be able to go places when I want to. I have 2 brothers out of state. I have 1 brother that is about an hour away, but he has his own health problems. My brothers ex-wife comes over about once a week when able and is a great help when she can. I tried haveing a volunteer from hospice come and sit with my mother once in the beginning, but they aren't alloud to do anything but sit and keep her company. They called me after 1 hr. because my mother needed changed. Well, I guess, I just needed a place to vent. If anyone has any suggestions to make things better for my mother, please let me know. I have started to have to crush her pills and mix it with food. Her appetite has really decreased alot lately, and I feel so bad for her. I wish that I knew what more to do to make her life easier.
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Scared, I agree w/ Lynn's advice about seeing if you could move back to your former town. To be in a new community with no help, and not even the chance to get away for a brief break w/ your friends, is terrible. This caretaking is very overwhelming and the constancy of it is what becomes seemingly unbearable. You feel like you're going down a path of lunacy after awhile, and your own well being starts to take a plunge. I have my husband and friends to keep me company and keep me in reality, and help to lighten the load....if nothing else but just to take me out of the mindset of constant caregiving. I can totally understand your feeling of being alone, scared, and overwhelmed. I hope you can move back. Just insist on it. Best of luck. We are all here for you.
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the primary carer always feels guilty that they could be doing much more for the patient then occasionally you realize that you are caregiving because in fact you have been chosen and are the most trusted in the family. then you feel rather honored. my sister and a niece both have attempted to caregive for my mother. one was blatantly rejected, the other ran off in a more subtle manner. so even if im a jerk, im the chosen jerk and the hospice women and men believe that the household is more tranquil and conducive to life.. may not be very rewarding in this lifetime but ill have a cushy position in hell. probably be at least lieutenant governor of a region or something.. probably a company car at least.. probably have an ugly wife, it is hell after all..
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Does your husband qualify for home health care? I took care of my dad after his stroke for 3 yrs only getting "time off" when he went into the hospital or nursing home for short amounts of time. He has had several different health care professionals that visited him in our home for different things. They alone saved my sanity. I also had no help. They would listen to me vent and also sympathize with what I was going thru as a caregiver fulltime. One day my dad fell (slid off side of bed) and refused to let me help him up and carried on for an hr or so in a very angry and abusive manner. His "bath lady" called to set up his appt for the next day and I told her what he was doing & she had me hold the phone to his ear and she told him to let me help him up and she would see him the next day and she would have a talk with him. After that he allowed me to help him up and behaved himself. This was on a sunday and I felt so helpless! They have all expressed how hard they know that my caregiving 24/7 has to be. Some say they could not do it on a fulltime basis like I do. They sit down and talk to me after seeing dad in his room and they let me get mad about the situation but we also laugh at some of the stuff that happens and they talk about their personal lives which allows me to view these people as friends also. When the day comes and you feel you cannot handle all the caregiving alone look for a long term care facility close to your home and arrange a tour. We all need help and please take advantage of a good nursing home to help you out. Good Luck
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Scared, is there a way you could move back to your former neighborhood?

It would really be scary not to have help. My hubby sometimes shows signs of dementia(he had a concussion about a yr ago with brain bleed) so it's worry some about what I'm going to face as well. Friends and Church would be my only help because his grown children only wants to come around when "They" need something not when he needs something...but for our area, that seems to be the norm for grown children now.

Keep posting and hopefully we can be your sounding board with some suggestions that has helped us, Hugs and Prayers to all!
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I wish I felt like I could do it, but I just don't have the patience, strength, stamina or courage to do this. There is no one here but me. Our children are states away and the boys wouldn't help out anyway. Our daughter has 3 children under 5 and is in the military so there is no way she can help out. As the disease progresses, I will be my husband's sole care giver. We don't have any friends here because we just moved here 10 months ago. Big, big, big mistake. If I had realized that my husband's insistence that we move here was the irrational thinking of Alz or LBD or PDD, I never, ever would have agreed to move. At least I had a job where we were and some acquaintenances who may have helped me. Here...nothing...it's a lonely, scary, overwhelming feeling that has robbed my of sleep and has worn me out physically, mentally and emotionally and it's only just begun! The major change came on Christmas Day and has gone down hill since. Very frightening. I pray for the courage to face this, and am thankful for this forum where I can get some ideas from others facing the loss of a loved one to an insidious disease. Thanks for letting me vent.
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