<p>MIL ended up in hosptial then rehab in a nursing home this summer. It is clear that she will not be able to return home. She has dementia as well as mobility, hearing and sight issues. Even with much more help there is no possiblity of FIL caring for her at home anymore.
Her dementia is such that she pretty much lives in the moment. If you’re not there right now, then you haven’t been there at all. This is very upsetting to her as she feels abandoned. It is hard for everyone else when you’ve been there for hours, run to the bathroom and she often thinks that you just showed up. She keeps telling FIL that she wants to go home. When she was home, she didn’t recognize it as her home. We have started taking her out for treats or a meal when she has a doctor’s appt. But the “going home” continues and is wearing out my FIL who has shown remarkable patience for a very impatient man. Anyway, he would like to take her home for a visit on the next time we take her to lunch. I’m not sure what that will accomplish as I doubt she will recognize it anyway. And who knows how she might react. Interestingly, she is in better spirits with the staff than with us.
Does anyone have some good references that can help us better communicate with her? I know we have to stop saying “do you remember” but we’re at an impass as to what to say when she comes up with strange things or cries to go home. Thanks in advance.</p>
<p>The best book is “The 36 Hour Day” by Mace and Rabins. Great resource for family members of pts with different types of dementia. Good luck. This is so difficult for the family.</p>
<p>Also, I would reassurre her that you will be taking her home. That will comfort her. And she won’t remember the content of the conversation. Your goal is to make her feel better-- to assuage her anxiety, and telling her you will be going home can do that. She will feel calmer.</p>
<p>I sympathize. My father had Parkinson’s and about a third of these patients have Parkinson’s related dementia. He was one of them. He would leave the house and the police would call. He would use his walker to stop traffic in the street to go to the bank. He was fixated on it. He would get up in the middle of the night, make breakfast and want to go to church, and leave the burner on. We got live-in help, and security code locks so he couldn’t unlock them, etc. He would wander the house and look for his deceased family members. He called me by my mother’s name, and my D by my name. The dementia was harder than the Parkinson’s. I think it was because he was always the strong head of the family, and it was difficult for me mentally to take over that role where he was concerned. I would get impatient and frustrated. That is NORMAL. My D was so much better with him later on, as she adjusted to the fact that her grandfather as she knew him was dead, and this was just a befuddled old man. I still saw him as my father, my strength, and it was the hardest thing for me to cope with it. She could distance herself more easily than I could from our former relationship. And that is how you have to deal with it. You must see your mother as a patient, not as the mother you once knew. Until you can do that, and it is VERY difficult, the frustration will continue to build. I think that is why elder health care workers can deal with this so much better, because they are distanced and the pleas to go home or go to the bank don’t have any context to their relationship, whereas they evoke memories and ties to the person that was. This may sound cold, but we kept my father at home with us for almost seven years before he died, and those years gave me an insight I didn’t have at the time it all started, or while it was going on. Don’t be afraid to reach out for help. And perhaps rotate the members of the family that go to visit so she has plenty of visitors, but you only have to deal with the pleas less frequently. And if everyone is there, then the pleas are the topic of conversation and stirs everything up even more inside you. Just a suggestion. God bless you. Physical ailments were so much easier to deal with, even though they were life-threatening.</p>
<p>My neighbors had a father that had dementia and he lived with them. She had several strategies to help him throughout the day. She typed up notes to reassure him about his whereabouts and reminders. One note that was put in several places in the house said something like, “Dad, you live here and have been in our house for three years. You are not a burden. You have a disease that makes you forget things. We love you.”</p>
<p>She and her husband both worked so he was in the house by himself for a good part of the day except for a mid-day visit from someone they hired. </p>
<p>My neighbors also made up a photo album with all of the pictures labeled that he looked at constantly. </p>
<p>Best wishes for you herbrokemom, you do not have an easy road ahead.</p>
<p>I took care of my grandmother for awhile soon after I graduated from nursing school. A few things that helped me cope:</p>
<ol>
<li> When she forgets, she really has forgotten. I can keep saying the same thing over and over, but she doesn’t know I’m doing that. Therefore, on the 6th or 7th time, when my voice has an edge to it, she doesn’t understand why I’m angry. Try to phrase things as if it is new information - which it is, to her.</li>
</ol>
<p>I had trouble getting my grandmother to eat. A full meal was overwhelming to her and she wouldn’t even try. I began making a sandwich and quartering it. I would give her a quarter at a time. When she would say “I’m hungry” (which she said a lot), I would say, “Oh, look, you didn’t finish your lunch.” It worked really well. </p>
<ol>
<li><p>Get her to talk about a long time ago. People who are losing memory usually lose short-term first. They know something is wrong, and feel stupid. Talking about long ago puts them on surer ground, and they feel happier. Ask her what her father did for a living, or about where she went to school.</p></li>
<li><p>Along with the written notes and memory joggers - put up photographs and label them. Husband Jack. Daughter Jean. My home. (Or “my room” in a facility). Mom and Dad. Even photos of nurses or primary caregivers. Make a daily “to-do” list - again using photos wherever possible. Include basics and routines, as well as visitors, etc.</p></li>
<li><p>When she gets upset over things like you “not being there” when you were - correct her politely. Say, “I have been here; I just went to the bathroom. I’m sorry that upset you that I wasn’t here when you were looking for me, but I’m here now.” Leave a written note (or have a dry erase board) that says “Be right back” and sign it. Ask her to hold it when you leave, so you can point to it when you come back. She won’t remember it, but it will “make your case” for you, and help her move past the anger faster.</p></li>
<li><p>She is saying, “I want to go home” but she means “None of this is familiar - I need someplace safe.” Home might even mean the house she grew up in. Like all of us, she wants her mom when things get scary. My grandmother thought I was her sister. She called me Ida, and asked when Daddy was coming home. You probably need to address her as if she said the second. “Don’t worry; we’re here with you.” “It’s okay; we’re going to make sure you get taken care of.” You might even be able to bring a couple things from home to make her feel better. Perhaps a favorite lap quilt or her own dinnerware.</p></li>
</ol>
<p>Just a few ideas. I’m sorry you have to go through this. It is not an easy thing to do.</p>
<p>binx, That is excellent, thank you for sharing it. I wish we’d read that in the early stages of my grandparents alzheimers. </p>
<p>With my Great Aunt, she got to the point where she would complain to her daughter (who she no longer recognized) that her daughter never visited, didn’t love her, etc. It was painful for my Aunt but she learned to steer the conversation away from that topic. </p>
<p>My heart goes out to all of you who are dealing with this. It is a difficult road and I wish you peace.</p>
<p>I have a relative who set up a guest book in her mother’s room, so that anyone who stopped in would sign. Even if she doesn’t remember your visit, she can see evidence that you were there.</p>
<p>“long with the written notes and memory joggers - put up photographs and label them. Husband Jack. Daughter Jean. My home. (Or “my room” in a facility). Mom and Dad. Even photos of nurses or primary caregivers. Make a daily “to-do” list - again using photos wherever possible. Include basics and routines, as well as visitors, etc.”</p>
<p>A friend of mine, a communication professor specializing in helping people with dementia, says to make a photo book of family members. Have one picture of a person’s face on each page with a one-word description: “daugthter,” “cousin,” etc. The person with dementia will retain their ability to read one word things like this for a long time.</p>
<p>Friend says to put an apron on the person and attach the book to a ribbon and the apron. The person will get great pleasure out of looking at the book.</p>
<p>No words of advice, but I’m so sorry to hear this. How heartbreaking. Best of luck to you.</p>
<p>Great post, Binx!
I especially like #5. My grandmother, at 98, wanted to get back to ‘Baxter Street’, where she had lived before she married.</p>
<p>Sorry for your situation. We also have experienced (and currently experience) these issues in our family, and it is difficult. I like a lot of the advice noted above. One other thing is to make sure that the medications given are working ok. None will really do that much, but sometimes they worsen the problem. We have seen that some had worse side effects than others (including hallucinations on top of alzheimers). I also think that the long term memory seems to work longer and talking about pleasant things from long ago does at least distract from the present where everything is mixed up.</p>
<p>Second what anothermom2 has said re medications. It can blunt a lot of the anxiety and agitation. It requires some patience and persistence to get it right, but it can make everyone’s life better.</p>
<p>When I was 22 and the primary caregiver for my mom, who had early-onset Alzheimer’s, my mantra became “Whose problem is this?” When I was horrified because my mother ate the contents of the sugar canister in one fell swoop, by asking “Whose problem is this?” I realized that I had to lock away the canisters, since she clearly did not have the cognitive ability to understand that this was not a wise choice. When showers became a wrestling match, with me the usual bruised and battered loser, “Whose problem is this?” helped me to understand that forcing my mother into a confined space that had hot liquid raining down from a silver snake-like object had to be terrifying; once I started donning my swimsuit and getting in the shower first, it was much easier to get her to join me. Shaving her legs and armpits…quit doing that, since it was my “problem” not hers.</p>
<p>I also learned to eliminate choices. Choices require decision-making and are quite confusing. Dinner was served one item at a time; if I set down a dinner plate with meat, potatoes and vegetables, my mom was virtually paralyzed by the array of food. I learned to put out some veggies, and once she ate those, if she was stil hungry, I would add the next item. (There’s a reason the book mentioned by jym626 is called “The 36 Hour Day”…dinner alone could often take 3 hours or more!)</p>
<p>None of this directly addresses your situation, herbrokemom, but I hope it can give you some direction in how to tackle your particular circumstances. Dementia is heartbreaking and exhausting…please, please, please be sure to take care of yourself too.</p>
<p>Making a beautiful “remote memory” photo collage for the wall…is a good idea for her door or where the personal nursing aids will see it with simple easy to read labels. The labels should help people recognize her former vigor and value, and should elicit compliments and positives. There is always that night staff person who doesn’t know her or that substitute aid. Caring for the personal needs of adults with dementia can feel very unrewarding but if you give them something to understand you will get more humanized care. </p>
<p>The goal is to help nursing aides see her as a fully human person deserving respect and patience, and the goal is to elicit the best responses from her caregivers. I would include a beautiful picture of her as a child, and in her prime. She would likely enjoy seeing her own family of origin and is less likely to recognize herself as an adult as much as she will know her own parents and siblings in photos. </p>
<p>My grandmother lived to be 99. Her photo collage showed the staff that she had been on horses at one time and that she had been an excellent professional who also did volunteer work. Photos with her with her grandchildren and great grandchilren reminded the staff that others care and will be checking on her condition. </p>
<p>My second comment was if she is confabulating (filling in voids in her memory with jumbled fictions/versions of truths), do not correct her content but do try to address the affect behind her confabulation…unless she is upset by her beliefs…ie feels that she has missed a train and is distraught…distract her and instead respond to the feeling not the content of her confabulation…ie she is “lost” so make statements about her “belonging here with us” and we “keep you near us so we can see you often” rather than argue about missing the train. </p>
<p>Responding to the emotions of someone with memory impairment is the goal…to keep them comforted and distracted. They “need” the confabulations to explain an increasingly baffling reality so there is no need to take their beliefs away from them unless they are upsetting. IE my late grandfather always told me when he was dying in a hospital, that in a “litte bit, I will take us all out to get a bite to eat.” He thought we were on a holiday and he was still “hosting” and offering to pick up the tab. There was no reason to disturb his adaption…to reality since it was positive for him.</p>
<p>These are great ideas. I sure hope that some of them can help you. i went through dementia with my dear mother 2003-2006 and it was incredibly difficult as you already know. I’m thinking of you. So many of us have been through it. You’re not alone.</p>
<p>As a hospice nurse I work with a lot of patients with dementia, often not their reason for being on hospice. It is a very difficult disease because you lose the person twice. It is especially hard on the patient when they are in the stage where they know they are confused. It is important to remember that they are truly “in the moment”. The suggestion people have made are excellent. I would add that being in their moment rather than trying to get them to yours is very helpful. </p>
<p>I especially like the suggestions of addressing what you think is underlying the complaint, stating you love them and they are safe when they tell you that you never visit.</p>
<p>Medicating anxiety can be very helpful but does take a doc or nursing staff that is paying attention to what is working.</p>
<p>Remember to support your FIL since this is especially hard on the spouse.
Ellen</p>
<p>We are dealing with a similar situation with my mom. I just got the book “The 36 Hour Day” and it is so helpful as has been reading the advice you’ve all given the OP. While stressful on her children it is really awful for my dad. She throws a huge fit when he leaves and we haven’t figured out the best way to mitigate his leaving. I’m trying to get him to read the book to give him a better understanding about her behavior. Her anxiety is increasing again so they’re adjusting her meds. I hope it works…</p>
<p>Also find out if they are monitoring her blood chemicals through blood tests… My grandmother would become terribly anxious and we would know that her potassium (or sodium - sorry, faulty memory) was getting out of whack. At first the staff didn’t credit us with figuring it out, but after a couple of episodes they went right to the blood draw.</p>
<p>Twomules, good advice. My mom’s memory problems & behavior issues were out of control when her sodium, potassium, and calcium levels were off. Because they were all off at once - and the docs dealt with only one issue at a time - we know it was all three. She got a little better each time one issue was fixed. That is not to say that all is well, but it is SO much better when her levels are in line. It’s important to make sure that chemicals are in balance.</p>