Thinking about you abc

M1

Abc123, hope your week with your mom is going okay.  Will be interested to hear an update when you can.

abc123

Hi. Thank you for thinking about me. I am a complete emotional wreck. My parents neighbors called me and my dads brother also called. They are all equally as concerned as I am. 

I leave in the morning for the 9 hour drive. I have a phone appointment with dad's attorney tomorrow. The secretary has already shared valuable information with me. Dad does have his will in order, advance directives are in order, has POA for my mom, Trust is in order. Funeral and burial arrangements are all completed. My questions for the attorney will be, who is POA for dad, is there long term care insurance. I will set up a meeting for dad and I to sit down with the attorney and review what's already in place and make any necessary changes/additions. 

I have another appointment scheduled for Tuesday with a case manager from a home care assistance company. Mom will be assessed and a care plan will be made for her to continue to live at home with dad. I am also considering have her assessed by hospice just to satisfy my curiosity. Dad will also be getting assessed at the same time as mom only he isn't aware of this. He fell back in February and was diagnosed with a concussion. That resulted in a MRI in office and another test done at home which lasted 74 hours. I can't recall the name of that procedure. He was connected to a computer and was covered in electrodes. He also had a EEG done in office. We really lucked out and got a fantastic neurologist for dad. He recently had his yearly checkup and his PSA levels were on the high side. Referral appointment for that problem on the 13th. Since he fell in  February he has not been the same. He is definitely having cognition problems. He is repeating the same stories, spending too much money and overall he is not himself. He sounds almost childlike at times. 

I want mom to be assessed before dad leaves on his trip. I want him to accept the fact that she is progressing rapidly and she needs to stay in the safety of their home. No more outings, no more restaurants. Had they moved back to our area, I would have been able to help him take care of mom so much more. He had all the usual BS excuses, such as mom didn't want to move, he would miss his social life, he would miss his friends, he would be bored. 

M1

Sounds like you've planned well, as well as you can.

abc123

PART 2

I understand about his friends and his social life. I get it. His friends pick him up and take him to lunch, gun shows, clay shoots. He was very active prior to his fall. The couple next door are much more than neighbors, they are true friends. They have him over for coffee just about every morning. They cook and deliver a hot meal to the house at least 3 nights a week for him and mom. Every time mom falls, get stuck in the bath tub, has a bad incontinence issue, he calls them and up until last Saturday night, they came to the rescue. Last Saturday was their 62nd wedding anniversary and he insisted on taking mom and the neighbors out to dinner to celebrate. I tried several times to talk him out of it because it's just too overwhelming to bring mom out in public anymore. That ship has not only sailed, it sunk. Mom was extremely agitated the entire evening and was lashing out verbally at everyone in the restaurant. Not to mention she did not touch her food. When it was time to leave, he went get the car and drove up to the handicap ramp to pick up the ladies and mom. Well, they weren't near the ramp, they were at the main entrance because that's where mom went, like a shot! Then she sat down on the top step and wouldn't budge. She would not cooperate at all, cursing and shouting at people. It's a Saturday night at a very popular Mexican restaurant in Dallas, very crowded. Mom was blocking the main entrance. Suddenly a very large, very strong man appeared and began talking softly and respectfully to mom. It took a while but he got her to calm down just a little bit. Dad pulled the car around to the main entrance and opened the car door. As the man (an angel in my book) continued to speak softly to mom while listening to her lash out at him, he scooped her up in his arms and put her into the vehicle. If he wasn't a blessing I don't know what is! They got her home, she went to bed in her clothes and later that night fell out of the bed. The neighbors called and told me what happened. They are concerned for both of my parents. They have seen her in the fetal position several times recently. To me, these ladies are also angels. However they realize they can no longer help. They have both experienced alzheimer's disease with their own parents. They say its time for my dad to make some hard decisions and I agree. They are my emotional support team since I get none from my sibblings. They feel like mom should be placed. I think so too. But at the very least dad needs to bring in professional help. I am thinking a 12 hour shift from 6am to 6pm to start with. Dad made the decision to stay where they are, 9 hours away from me. I am making the decision that he bring in professional help. He is looking forward to his visit with his brother and he deserves every minute of the trip. If he doesn't make a good choice to go forward with professional care for mom, I will step back and call APS. 

Quilting brings calm

I hope your drive went smoothly.also your phone consultation. Vent to us as often as you  need to this week.

abc123

Thank you M1 and Terri. I got in at 10pm. Got a really late start. The call with the attorney went well, very helpful! The only thing the attorney does not know about is the LTC insurance. He’s not aware of any but said that doesn’t necessarily mean there is none. DPOA’s for health and finance are in place. 

Moms assessment is tomorrow at 1pm. I’m anxious to hear what he has to say. 

M1

Glad youre there safely, all sounds good so far. Post when you can!

Quilting brings calm

Abc123 - saw your comment tonight  on a different thread. Sounds like your visit isn’t going well?  Three weeks is a long time.  Don’t forget to take  time for yourself.

abc123

I’m devastated. It’s as if she has forgotten how to stand up. She has been on the couch since Tuesday afternoon when we had the assessment with the care provider. She was social and pleasant with Ben. She answered his questions the best she could. Out of about 12 questions she could answer three. She knew that my dad is her husband. She knew me by name and that I am her daughter. Ben asked her is she loves her husband and she said yes. Ben asked her how much do you love him? She raised her hand and spaced her thumb and index finger out a little bit and said “I love him about that much” Everyone burst into laughter and she did too. She stood up for Ben. It took a lot of effort for her to stand up. That night it took Dad and I 20 minutes of coaching to get to stand for just a moment. We had to quickly wipe her and change the depends. Same scenario Wednesday morning and night, and Thursday morning. Last night she could not/ would not stand. She is not being uncooperative about it, she just can’t stand up. Last night after an hour of coaching her to stand, Dad had to go to bed. He couldn’t go anymore. I continued coaching and encouraging, she stood for a split second. I used scissors to cut the depends off. I finally got her to sort of roll on her side. I cleaned one cheek at a time this way and was able to wiggle the depends up in place by getting her to roll from side to side. I was able to wiggle a clean pad under her. The cushion she is on is completely saturated with urine.

abc123

It’s truly as if she can NOT stand. I always sit close to her so she can feel my presence and I can easily touch her, hold her hand and rub her arms. I believe as human beings we have an inner need to touch and be touched. I believe the human touch feeds our souls. So last night I sat close to her and held her arm. I broke down emotionally. I asked her if she had forgotten how to stand? I told her it’s okay to tell me if she has forgotten how to stand. She just looked at me, her face was like a child’s face. I told her how sorry I am that she has this terrible disease. I apologized to her for having to experience this loss. So she is still in the exact same spot, full of urine. I’m very worried about bed sores. My dad does not want to hire Ben’s company. He said he doesn’t need any help that he can do this by himself. He said someone may steel something. To me, that’s all bull crap. He just left to meet a buddy of his for an outing, which he deserves. I said to him before he left just now, that if we had Ben on our team, they would come and bath mom and clean her and get her to a dry spot. He said something muffled that I couldn’t understand and left. He has all the proper paperwork in order. He has everything BUT long term care insurance. He will have to pay out of pocket for these services. Is it his pride that won’t let him accept and hire help? He has the money to hire help, at least 20 hours a week. That would be a HUGE help to him and a blessing to momma. But he doesn’t need help, someone may steel some object from the house. Mean while my mom is saturated in urine and can’t stand up. I need advice. I’m scared.

Stuck in the middle

This happened to a friend who has AD.  He went to hospital to rule out stroke or whatever, and from there to SNF.  He remains there, with hospice care.

I think your mother needs 24/7 professional care, where pairs of aides can roll her over and change her.  20 hours a week isn't nearly enough, even if your father would agree to it.  As is, she will soon develop infections and die from them.  In short, it is time to place her.

In your shoes, I would tell my father I intended to call adult protective services unless he consented to placement.  They can get a court order declaring her a neglected helpless adult and take over control of her care.  My father would never forgive me for that, but I would do it.

M1

abc, I would think about calling nonemergency services (doesn't have to be 911) and tell them you need her transported to the emergency room.  This warrants evaluation, and they would probably admit her, which then gives you the opportunity to either get servcies at home or have her sent to rehab.  I don't see how you and he can care for her like this.  Let him go on and go on his trip, if he will.  but you can't do this by yourself.  She could have had a stroke for all you know.

Quilting brings calm

I would call ( since I don’t know of any non emergency place that would transport to the ER) 911 for transport to the ER and evaluation.  Do it while he is gone.  Your dad is in denial or has paranoia that is impeding her basic care.  He will have to pay up until her income qualifies her for Medicaid. 

I’m so sorry abc.  My time to place Mom in a skilled nursing environment( and away from my dad)  is coming too. 

abc123

Thank you for the suggestions/advice. I appreciate it. I have plenty to think about. The ladies from next door came over and helped me. It took the three of us to move mom from the couch in the den into her bedroom, we used a gait belt and a wheel chair. It took an hour and 30 minutes to make it happen. Once we had her bedside, I quickly cut the depends off with scissors and quickly cleaned her bottom with a warm cloth. We had each and every move planned out, everything we needed was in place. We completely covered the king size bed with large pads and placed another fitted sheet over the pads. A bucket of warm soapy water and wash cloths was in place, a clean gown and depends were ready. She is clean and dry for now. 

She is no longer sitting up. She will not stand or sit up. She will pick up her head to take a bite of food and put her head back down while chewing. She is swallowing well. But she dozed off quickly after each swallow. I tap her arm to wake her and each time is new. I have to tell her that I have food for her and tell her what it is. Then she takes another bite. Repeat. I was with her in early June and she has declined a lot since then. She no longer walks, stands, toilets herself, soaks in the tub or sits up. She eats very little. She does ask for water and cokes. She is weak and very still most of the time. 

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Cynbar

Yes, please call 911 and have her taken to the ER for eval. It's possible something medical like dehydration could be causing this sudden decline, or at least is making it worse. But even if that isn't the case, the hospital staff can help you put a plan in place, and make clear to your dad that she needs help. Placement might be the plan, or home with hospice and maybe private help on top of that. They will also call APS if necessary. The social workers will help you assess your options and can make it all happen quickly. Please don't let this just go on the way it is, it's not fair to your mother who is suffering at this point. Your dad isn't going to make good decisions for her, it will have to fall on you.

M1

abc, to be hon est, from what you are describing I think she is likely to die at home--perhaps very soon--if you don't take her in.

mommyandme (m&m)

In my opinion, it’s time for hospice to be called, at least.  They can likely provide a twin size hospital bed (among many other things) where she can be raised up to a sitting position to eat and drink etc. Also she’ll be easily accessed and rolled from side to side for changing and cleaning.  

I wouldn’t go another day without hospice on board!

abc123

A sincere thank you to you who have commented and offered support, suggestions. Hospice has been arranged. Everything has been ordered, a bed mainly! 

Dad & I were outside for a break. Dad went inside to check on her. She was in the dining room sitting in the wheelchair. She has not moved an inch unless coached to do so since Tuesday, not one inch! Yet she got up and walked into the dining room and sat down. This disease is unbelievable in every way. 

M1

So glad they are there, should help a lot. Relieved for you....

abc123

M1, thank you for your support and concern. You have no idea what you mean to me.

M1

Least I could do. Your posts are always so supportive of others, you deserve the same......

mommyandme (m&m)

Relief for you and yours, I’m so glad. I hope your journey today provides some peace.  The adventure with this disease is confusing and unforgettable, oh the irony.

abc123

Thank you for your kind words M&M.