Getting impatient living with a person suffering from Alzheimer

First, I would like to say that I am not the most patient human being alive, but I am empathetic and definitely work hard to understand all aspects of a situation before giving up all hope.

My boyfriends grandmother suffers from Alzheimers disease and she has been living with us since I moved here for graduate school. Her assisted living home was destroyed by a hurricane and her daughter is currently working out of the country. I have been living with her for 7 months. I would like some feedback and/or advice as to what can/should be done as I am growing impatient and frustrated as time goes on.

Here is a short history of the patient: (from what I have been told) She is 89 years old
- No one is aware of when the onset of Alzheimers actually began. At the time she lived at her home and her son lived with her on and off but failed to inform family members when she was forgetting food on the stove and burning it etc. he basically ignored warning signs although the patients own mother suffered from Alzheimers and this was approximately 7 years ago.
- about 3 years ago my boyfriends mother got news that her mother was driving and getting lost for hours on highways and ending up at all sorts of wrong destinations and she realized something was definitely wrong and was upset that her brother chose to ignore the early signs and seek help. And she was diagnosed with Alzheimers/Dementia.

I have never been around any individual suffering from Alzheimers prior to my move and have taken the 7 months battling with trying to learn, understand, be sympathetic yet keep my sanity at the same time. Prior to her living with us I had been around her but there is a huge difference being around her for an hour and living with her. I have questions that some people may be able to answer for me and offer some advice as to the stage of progression she is in and how to cope with it.

We have a nursing service that comes in daily to care for her from 9am-5pm when I am normally in school. However, her worst behavior tends to be in the evenings and it took me a few weeks to realize how much it was interfering with my work. Aside from her inability to recognize her grandchildren, her children and anyone for that matter I wasn't prepared for what more was to come. Obviously, I was new to the situation and while I would be sitting at a table doing my work she would repetitively ask questions, ramble about (i dont know what) and/or start "cleaning" my papers, books etc. exclaiming at the "disgusting mess" on the table. My boyfriend, her nurse would try to tell her to leave me alone but she simply could not remember what she was told one minute to the next. This is when I realized that I am dealing with a pretty bad situation.

Most days I am able to either hide from the frustration caring for her often creates but some days it becomes unbearable. Also, I am aware that I may feel more frustrated because I am not directly related to her but I also naively believed in the beginning that I could somehow get through to her. There are moments when she is insanely sweet and easy to get through to however, the times where she is cursing at family members screaming for the police and mumbling about people try to kill her/killing people, I grow increasingly frustrated. I would like to list some of her behaviors and would like to know the experiences of others and whether these are signs of extremely progressed alzheimers:
- She cannot recognize any faces, she believes her children are her parents and her grandchildren are strangers etc. she cannot even recognize herself in old photographs.
- She will places dirty/old food in her pockets and believes napkins to be money and become combative when we try to take them away from her
- She has no idea where the restroom or her bedroom are and has to be lead to them each time she has to go to either
- When I try to be nice and take her along for car rides/errands so she can get a change of scenery I become irritated because she is constantly complaining and touching strangers
- She is unable to get dressed/undressed alone although she also become combative most evenings when we try to get her layers over layers of clothes on that she puts on throughout the day.
- She has an extremely fiesty character and although my boyfriend is extremely laid back I am saddened by the mental and emotional abuse he puts up with when she begins cursing at him and saying horrible things.

I have done my fair share of research and she suffers from every single symptom as far as her recollection and behavior go. However two things seem to stand out to me and also sadden me are that a majority of the males in her family have grown increasingly uncomfortable to be around her because she believes them to be her boyfriend and says inappropriate things to them tries to touch them etc. I know she is unaware of the discomfort her behavior creates but I am interested to know if any others have this problem?

Lastly, I have noticed in recent weeks that she will LOUDLY whisper gibberish and just repeat herself for a period of time even though i try to distract her and ask if she would like something or if she's ok. I am aware its a result of her unawareness/insecurity/confusion but it's insanely difficult to sit back and listen to.

Any advice/similar experiences would help. Sorry for the long detailed post...its been a long time coming :)

Thank you.

Hello ..........

   This may not be of any help, but .... if it was your close Grandmother (known all your life) .... the situation would be even worse. I don't mean to minimize this at all - but maybe your boyfriend needs some evening breaks, as well as, you!

   Is there a chance that the two of you could find someone (Grandma would trust) to come in two nights a week ... so that the two of you could get out of the house at least one night a week. Call it a date night or whatever. You two need breaks - even if your BF doesn't appear to show it.

   My Mother just passed about 6-weeks ago, after being in an Assisted Living Home for Dementia for 16-months. Before that, she lived at her own home and had 24/7 caregivers for 15-months. And before and during that timeframe, I called her daily for 16-years and went to her house (40-mile round-trip) for about three years while paying for all of her bills. 

   I did not live with her during those timeframes but so her often and worked closely with any of her help. She was 95 when she passed.

   From what you've described, it does sound like she's well into this sad disease of dementia or alzheimers. Since going weekly to her Assisted Living Home, I was able to observe my Mother and the others in her home for well over a year.

   Some have bitter and even violent attitudes ... and some only go there occasionally.

   My Mother did call the police twice when under care at her home - and accused one of the caregivers of theft to the police. She also three times had episodes over night thinking and screaming that someone was in her house trying to kill her.

   These things are very traumatic experiences .... to all .... especially an untrained caregiver and/or relative. You two need help in that area. Please tell your BF that the two of you need to get out at least once a week - to have some fun or privacy. More often is even better.

   One of the most common problems with memory patients is distrust. I think it's one of the first signs. So finding and introducing a caregiver may be a problem ..... unless the one who works days (who grandma knows) can also work two evenings a week - for 3 or 4-hours an evening. Oh yes ..... and bad behavior at night (or after 5pm) is very typical of those memory illnesses.

   I think if you had two nights a week away from grandma .... maybe one night to study at a library and one night to get out with your BF for some fun - but every week ..... you might get more mileage out of your patience. I think this would help the BF a great deal - even if he isn't showing signs of stress yet. He will - in time. Do something before that happens ... please!

Peace and wellness

Rob & Gizmo

 

You truly need to place her in a facility that accepts Alz pts... You need not apologize or make excuses to anyone... PLEASE do this... I have worked with Alz pts in homes and during the 2nd and 3rd stages, definitely should NOT be cared for in your home unless it is on a 24 hr basis...and even THAT can be difficult... if they escape from your home, they will have NO idea where they are... ALL of your frustrations and feelings are completely understandable... I wish you love and luck!
Bettsann