new, frustrated, UGHH

daisy4 · 01-31-2008, 01:59 PM

My Grandmother has been living on her own up until this past Friday, My Uncle came in and found she was attempting to cut her arms off. She had cut herself from finger tip to her shoulders. Luckilly, on the tops of her arms not the underneath area. From that point on someone has been with her. I have been a CNA for 15yrs. and am currently a pre-nursing student, so it was a given who would make most of the care decisions and do most of the care from this point on. The care is between myself my dad and my 3 uncles, 2 of the uncles, myself & the doc. are on the same page 24/7 care my dad is almost there and my one uncle who is closest to her and checked on her everyday is in complete denial and making this process difficult for the rest of us..I understand his heartbreak but sometimes you have to put that aside for what is best for Grandma. No one has been staying overnights with her until this point, we now know she has severe hallucinations always children everywhere, she can not sit still for 5 minutes. So far she is bathing,dressing all her ADL's pretty well except for eating, she will not drink anything for fear she will have to pee to much, she will not eat much for fear she will get fat. She dips the water out of the back of the toilet and dumps it in the sink rather then flush, she does wash dishes, a quick dunk in soapy water dried and put away..No concept of day and night, the children (imaginary) keep her up all night..She is on Aricept, Nemenda, an antidepresent I can think of off the top of my head martz something or other, anyway, we are now on Risperadal, the first night slept all night, night 2 got up a few times still talking to the children and deceased grandfather. I am amazed at the moderate to severe cognitive decline but her physical is good, she trips a bit more but she is quick as lightning and going, going, going. Is there anything I can suggest to the doctor to get her to sleep..We are worn out only after a week..We plan to interview caregivers to give us a break, I don't know how she will react to strangers in the house..Right now we seem to be hurdling over so many obstacles. Family, insurance, Grandma..ect..I know my situation is all to common to alot of you, I would love any advice how to ease into this..A nursing home or in-home facility is not an option at this point..Sorry this is so long, it could be longer I have so much on my mind..

DGabriel10 · 01-31-2008, 02:41 PM

I definitely understand your frustration both with the situation and with your uncle that is in denial. I think every family has at least one that just doesn't get it, choses not to get it, or doesn't want to get it. There is no magic that will make them see what you see. All you can do is educate them, try not to strangle them, work around them, and do the best you can for your grandmother. Sometimes the family member in denial will catch up but many times they re unable or unwilling. You need to remember it is not what they do that makes the difference... it is how you let it effect you. So shake your head and go on with what you know to do as you try to educate them rather than get frustrated at them. I know... easier said than done... but it's a start and redirecting the frustration.

24/7 care is difficult for a family especially when your loved one is up at night. Family members still have their lives to live as well and staying up even one night a week can wear you out. Hopefully you can find a good caregiver that can come in for the sleeping hours and give the rest of you a break at night to get the rest you need for everything else.

Why is facility care not an option? I ask because I was a firm believer in "keep the parents at home at all cost". Both of my parents have dementia. Dad has vascular dementia for about 8 years and he stayed at home with Mom for most of that time. Mom was diagnosed with ALZ about 16 months ago but has had it for over 4 years. We had a caregiver with them and we spent weekends with them... and any other time that something unusual occured which was most of the time. Every time we thought we were settled something changed or happened that threw chaos back into our lives. We finally gave in and placed Mom and Dad in assisted living in September. It was a rocky start when both of them came down with the flu but now it is wonderful. I call but they don't talk long because they have something to do and somewhere to be. They are both laughing again and the darlings of the facility. It is amazing how much better off they are now that they are NOT at home.

As far as medications, you just have to try one after the other until you find something that works. Be watchful of any side effects. You may want to try an anti psychotic or anti anxiety rather than/ or with the sleeping pill. Dad is the one that talks to his dead relatives and an antianxiety worked better on him.... after much trial and error. Be sure grandmother's doctor is very familiar with geriatrics and dementia. Give him all the symptoms and see what he recomments. Don't hesitate to go back and give him the side effects you have seen and ask for something different.

Absolutely be sure that somebody has a durable power of attorney and medical directive or medical power of attorney on your grandmother. Life will be so much easier with these documents. Also be sure that any doctor she sees, that you get everybody's name on the hipaa forms.

As for all those querky little behaviors your grandmother displays. She is doing the best she can. Unless the behavior is harmful to her or other then don't try to change her behavior. When Dad comes out of the bathroom in the morning and ask if Marvin (his borther) has already had breakfast and left for the day, I just tell him "YES!". I do not add that Marvin has been dead for over 20 years. Slipping into their world can be easier for them and you because they can no longer come into ours.

Welcome to the forum. There are many great people here with tons of useful advice. They also have great ears and shoulders when you just need to vent. They have absolutely been my salvation and sanity more days than one. So keep typing. I do hope you are able to work out an arrangement that is beneficial to all and gives your grandmother the care she needs. Know I will keep you all in my thoughts and prayers....

Love, deb

ibake&pray · 01-31-2008, 03:20 PM

Daisy, Welcome to the board.

I'm sorry about your Grandmother, and sorry for your family. It's a h*ll of a thing to dump on a family and a rotten way to lose a grandmother. I lost my mom to it the first of Nov. last year. My dad died 5 weeks before her from an anuerism, and he had vascular dementia also.

One thing Deb said is critical. If you don't have POAs, you need to get them and get them fast. Someone needs to have power over grandmother-and I hope it's someone who isn't in denial! Hippa laws will be all the easier to deal with with the poas...in fact, her doctors won't talk to you unless you have the poas as they have to protect her...even if that is what you are trying to do. Frustrating, isn't it?

What is your objection to a NH? The staff is probably at this point far better prepared to handle your grandmother and her behavior than your family is. And with staff rotation, they will be better able to handle her physically as they are only there for 8 hour shifts as opposed to living with her. You need to think that it is getting to the point where your grandmother needs to have round the clock care where she can have nurses and Lpns available to care for her. I know my daddy fought having mom in a home, but it was such a blessing for both of them. Mom got the care that dad just couldn't give her and daddy didn't have to worry about Mom getting lost in the halls and she got decent meals and so did dad. It was better all the way around for them.

It's hard to have your family go down hill so fast and it's hard to watch. i hope that you can find a geriatric specialist for your grandmother if she doesn't have one. She needs someone who is experienced with dementia and the other diseases of old age. Mom's was a god send who knew what to look for. You need someone who is willing to listen to your concerns and is willing to try medications and to adjust them if they aren't working. It takes time and patience...

good luck and come back to cry and vent..we've been there...got the scars to prove it..........

savv55 · 01-31-2008, 08:03 PM

Hi Daisy:

The others who have responded have given some excellent comments and advise. I haven't much to add but did pick something up in what you said and have a comment. You say you are amazed at the "moderate to severe cognizant decline" and what may seem (or may be unrelated), that "your grandmother refuses to drink in case she has to pee". Often in the elderly, a sudden drop in cognizant ability and agitation can be caused by a bladder infection (UTI). They often do not feel the UTI like a younger person. I would recommend you have her urine tested as soon as possible to see if anything is going on there. My Dad displayed rapid cognizant decline and we didn't know what was going on, then he collapsed with a UTI that went into the blood stream. He did not recover - please check it out.

Good luck - it is a tough road. Shirley

DrewsG · 01-31-2008, 09:36 PM

Daisy, My Mother had a UTI also. She was spending the night with me when she became very confused. Not at all like my Mom at this stage of her ALZ. After a trip to the ER we found the UTI. By the next afternoon she was much better. After the meds kicked in. I was very surprised at the rapid decline in her behavior.
We keep a close watch on the UTI problem now. Along with a hundred other things. They can decline very fast. She also had a low grade fever.

Good Luck to you and your family. You are on a long road. And its a rough ride.

I'll be thinking of you and your family.