Rough Week

White Crane

Another rough week. I thought I had all the documentation to apply for Medicaid for my DH. The lawyer told me I still needed more. Now I have everything except two documents an I am waiting for them to be mailed to me. If they don't come soon, I will be paying Another $6,530 to the MC facility. Since I've already done the spend down, this will really hurt.

In addition to that, our home of 52 years went on the market yesterday. I didn't realize this would hit me so hard but I feel like crying and feel very depressed. It feels like my/our family history is being taken away. After 52 years there are so many memories attached to that house and it is hard to let it go.

In addition, the MC called me Thursday afternoon and said DH was delusional and becoming aggressive. He has never been aggressive with them before so it was very upsetting to hear. I talked to him on the phone and tried to calm him but he was deep into his delusion. He thought that he was at home and all these people (at the MC) were invading his home and wouldn't leave. My first thought was that he had a UTI. After several minutes he seemed calmer and I told him to go to his room and I would take care of getting the people out of the house. He seemed to accept that so we hung up. And hour later the ER called and asked for permission to treat him. I was shocked to hear he was at the ER! The MC hadn't called back to say they were transport him so I thought he had calmed down. When I arrived at the ER, he was in x-ray. He was still very agitated when they brought him back and it was hard to watch and hard to keep him settled in the bed. The doctor said they found no UTI and his chest -ray was clear so he could go back to MC. He did give him something to calm him down before sending him back.

Yesterday morning when I arrived at MC the administrator put her arms around me and said she was sorry it was so hard. I asked her what happened and she said he had gotten very aggressive and lifted his walker and tried to hit people with it. This was a first as he has always been easy going with the staff. She said she thought he was heading into the next stage of Alzheimer's and would probably be more delusional. The nurse practitioner told me the same thing when I saw her later. They are adding Depacot to try and prevent a repeat of Thursday night. He has basically been in the same stage for awhile so this comes as a gut punch for me. All these things have added up to the point that I feel defeated and depressed and as always, very, very tired.

When I was visiting him yesterday, the other residents were doing their usual thing but for some reason it really got to me and all I wanted to do was to get away from all the confusion and delusion. Back at home I laid down and slept for almost two hours. This roller coaster called Alzheimer's is a terrible ride.

Brenda

CindyBum

Worst roller coaster ride ever! Each new stage has been awful to absorb for me, so I hear you on the gut punch.

I'm so sorry, Brenda. Sending you strength.

xoxo

Jeanne C.

Oh, Brenda. I'm sorry for you both. It sounds like that nap was a good call. Is he on risperdone or seroquel? Whenever my husband has an increase in delusions or aggression, that's the med his doc adjusts. I hope things settle soon. Sending peace and strength.

M1

empathize completely Brenda- that is a LOT to hit all at once. Hang in there. The Depakote is probably a good choice.

ThisLife

Brenda, I'm so sorry for you both. Sounds like DH was in that prolonged middle stage where things go downhill gradually (not always) and adjustments are easier to make. Then MC - adjust the money, sell the house, DH has a serious tip. Sending you hugs and strength. Glad you were able to nap.

ImMaggieMae

Brenda, that is just too much to have to deal with all at one time. It sounds like he needs his medications adjusted. Is he on Seroquel or Risperidone? Those seem to be helpful for delusions. It’s sometimes amazing how helpful they can be.
I’m glad you managed to get a nap in. Sending you hugs.

SDianeL

so sorry. My husband is in Memory Care at the VA. He also became agitated. Thank goodness they don't have to transport him to a hospital. I believe when he became urinary incontinent and was embarrassed and wanted to "do it himself" The doctor prescribed Depacot in addition to the Risperidone he was already on. The last 3 times we visited him he was sleeping and only woke for meals and went right back to sleep. My daughter mentioned it to the nurse who put a message to the doctor. They are now slowing cutting back on his meds to try to get him out of bed but not agitated. All I can do is cry. I want to go get him and bring him home but I can't. I know how you feel. Sending hugs.

JoseyWales

I'm so sorry all this is happening. It seems like placement should be when everything gets easier. It doesn't.

In regards to Medicaid - I have no idea which state you're in, but when I placed my DH he had not yet qualified for Medicaid. On the advice of my elder care attorney, I didn't pay the MC for several months, except for the portion that would be my responsibility every month (basically DH's SSDI check). When DH was finally approved for Medicaid, they also paid the back months. Maybe this is something you can ask about?

White Crane

Thank you all for your support. It is such a blessing to be able to come here.

Josey, I live in Missouri. I have never heard of only paying partially and will need to ask my lawyer about it. Thank you.

DH seems to have entered an angry stage. He has never been aggressive before but yesterday he doubled up his fist at the nurse and was threatening her. I guess the Depakote hasn't had time to start working.The doctor may need to adjust his meds again. It hurts my heart to see him like this. Yesterday he got up and started talking angrily to me as soon as I got there. Our adult granddaughters are visiting and this was the first time they had seen their grandfather in MC. They love him so much! He has always been so loving and good to them. I know it was hard for them but they handled it very well. He finally calmed down and we were able to play a game of rummy. He won! The visit ended well but the scene that greeted us when we arrived is sitting in my memory and it is hard for me to accept this new phase of progression.

northernlady

Hi, @WhiteCrane.

By way of introduction, I'm less than 9 months in on this journey. I also live in Missouri and have had no luck finding a CELA within 100 miles from me. I do have a good elder law attorney who seems to be covering the bases for me.

I find our Medicaid rules hard to live with. The only thing I heard is the State is so short staffed that people are waiting a very long time to get answers. I will keep my fingers crossed that your attorney can move things along for you.

This is so incredibly hard. From getting a clear diagnosis to figuring out how to pay for appropriate care for our loved ones. The costs are scary. All our savings were intended for my retirement since I will only have Social Security. Ugh

A nap sounds like heaven to me. My husband is still at home. He is still a very sweet man, and has given me complete control of our lives.

GothicGremlin

Hi Brenda —

I'm so sorry your DH is entering this stage. Some potential mild good news — my sister Peggy was on Depakote (and Seroquel) when she got to the delusion/aggressive stage (and yeah, the delusions/aggression seemed to come out of nowhere). Those two drugs worked really well for her. She was a lot calmer once they kicked in. The only tricky part was fine-tuning the meds so that she was calm and present, rather than over-drugged and a zombie.