Periodic changes in behavior getting more concerning

smn4646 · April 12

My wife was diagnosed with Alz 5 years ago at 65 years old. She has a strong family history on her Mom's side and we noticed concerns at least 2 years prior. Her memory decline was slow the first couple of years and then I started to notice more pronounced changes at roughly 3 month intervals. This winter she started to not recognize me at times or ask me if I was her farter. Always after dark. (sun downing?) Now she sees her Mom ( died 6 years ago) and Dad and thinks they live in our house. Some times she goes upstairs to our guest rooms to see who is here. We live alone in this house for 12 years. This behavior is now more around the clock. But she still showers, dresses, makes the coffee daily, feeds the dog and walks him! I was told her routines were a positive by the doctors when she was diagnosed. I do all the cooking, shopping and most of the cleaning even though she will tell you she does it. I stopped her driving and sold her car 2 years ago. She eats constantly and argues if you try to curb it. She was 5'4" her whole life and 118 pounds. She has gained 30 pounds in the last 18 months. I have tried to manage her eating between meals to no avail and she does not see her weight gain. I have had to buy her cloths that fit the last 12 months but she does not see the change, ( No suprise there) I guess I am frustrated that I can't do anything about these changes and it is getting more difficult. I have been her caregiver alone (as I am sure many of us are) the whole time. Our adult children do not live near by. Now she is getting more argumentative when she doesn't like my questions or answers. I am talking with her doctors office next week but frankly I feel they are just monitoring her progression with no solutions. I know that is how it is with ALZ. But after all I've learned and think I understand I am getting concerned maybe we are getting to a point I can't handle alone any more. Sorry for rambling. I am just frustrated and at a loss and need to talk to others who are in this boat. I do I friends I can talk to and my daughter. She and I speak about it but I know she is also concerned about what this means for her future so I try not to burden her with her moms progression. Our two son's seem to be more in denial about acknowledging the extent of the situation. I feel this is on me to take care of it but as I am sure all you know we need to share what is happening with someone. Thanks for listening if you read this.

Jgirl57 · April 12

welcome smn4646, I am so sorry you too are in this boat but glad you joined the forum. You have been at this several years now so no wonder you are feeling the strain of her progression. An increase or change in medication may help so it’s good that you will bring it up with her doctor and if you have not already requested a Geri- psych consult it may be time to get that going because it can take several months to get an appointment and some behaviors need medication/adjustments. My husband (alz) does not have a very big appetite , but when I have bananas or muffins or easy grab snack foods he will eat them one after the other not realizing he already had some. I have had to get creative to keep things out of sight. You are correct, it is all on you and it is exhausting . Keep reading the forum and know you have “ us” when you need to vent, ramble and ask questions .

charley0419 · April 12

I feel for you as everyday wake up wondering what’s next , my wife progression has been slow. Diagnosed about 2 yrs ago , mild dementia (whatever that means) I worry everyday if anything happens to ME no matter how small say a cold , flu bad knee, you get it , what happens in that time? She’s really holding her own but I know things will get worse. Kids live sort of far but all have own lives. If I bring someone in to help even one day a week she will freak out on me , very proud and independent women always was. They say the first person to go has it the best. But there times I wish she either go before me or get to point that she doesn’t realize what’s going on so I can get help for her, it’s a double edge sword. Like I always say no one knows this illness to you live it like we all are. This illness has no ryme or reason how it moves forward. Like I say This illness SUCKS and sucks the life out of you. I take her out every day even if just a ride , we go to same stores and antique stores all the time makes her happy , that’s all we can do KEEP THE FAITH ALL

cdgbdr · April 12

Smn4646

My DH is similar in his behaviors. I work full time and have a companion with him several hours a day. He now tells all kinds of stories about the companion that are not true. He has gained weight. I had easy to grab food available because he would get distracted and not eat but it's gone too far. Sometimes he thinks I'm his sister. He doesn't recognize our house of over 30 years and asks who else is here. This all occurs in the evening. I worry about his future and mine. I've spent a lot of time here and am looking into Plan B. I have a list of facilities to tour for a back up plan. I'm sorry you are in this situation too. I have support and it's still hard.

SDianeL · April 13

welcome. Sorry your wife is progressing. We understand. Eating behaviors are common. Caused by anxiety and memory loss. She doesn’t remember eating. Food tastes different. Many dementia patients crave sweets. Try to have healthy snacks and finger foods. Lock food in a locked cabinet if you have to. I wouldn’t worry about weight gain. In the later stages many stop overeating. If you haven’t done so, read the book “The 36 Hour Day” which helped me after my DH diagnosis. Ask her doctor for medication to calm her anxiety and for hallucinations. I would try to get help for a few hours a week. Tell her you need help. I told my DH that I needed to go to my doctors appts and someone needed to stay with him and that worked. I sent updates on his behavior in text messages to my husbands daughter who lives in another state. I was specific about any new behavior. I asked her if she wanted to know and she said yes. Please keep us posted on how you’re doing. This is the place for info and support.

smn4646 · April 13

Thank you all for your caring comments and advice. I know we are all in various stages of the same situation with the inevitable ahead. I try not to think too far ahead as that keeps me awake at night. However I also feel I already lost her several years ago as the woman I live with now is not the same person I have been with for over 50 years. I am sure many of us understand what I mean. It is like living with and taking care of a stranger who used to be your most trusted partner. Now when we talk she doesn’t remember what I said 30 seconds ago. Any way thank you for listening and sharing your experiences. It does help as I’m sure you all know.

newcomer · April 13

Same story for me with my ex-H, for whom I am live-in caretaker. He's 71 and I am 76. I am healthy and have good social network but I feel very close to not being willing to do this anymore. Adult kids have young children and stressful jobs and do what they can but major burden is on me. Other friends and relatives help occasionally but . . . . you know, it's not enough. In-home care does not feel much better to me than what I have now. I have found MC facility that both I and our kids like, for when the time comes. My question is how to know when the time has come. Do I need to stress out completely, in order to avoid guilt over making this decision, or does he need to have a health or safety crisis that makes it clear I can't handle it anymore? How have you all handled this decision and transition? Thanks💙

hiya · April 13

@newcomer there is no set time to put someone in MC. I’m getting ready for moving my DH. He has entered stage 6. Remember, YOU are important too. You deserve to live. If it’s getting too much for you and you have the finances, absolutely it’s time. Nobody on this site judges.

sandwichone123 · April 13

Hi Newcomer, Hiya is right. Generally by the time someone is wondering if it's too soon, it's not. If you wait until you're quite sure it's not too soon, often it's later than would be optimum (meaning your health has deteriorated or they are beyond becoming part of a community).

There is no avoiding guilt. No matter what you do, you will feel guilty, thinking something else would have been better. All we can do is our best.

Periodic changes in behavior getting more concerning

Comments

Commonly Used Abbreviations

Community Guidelines

Categories