Mom's Having Chest Pains

These last few weeks have been exhausting to say the least. Even though Mom is in a nursing home now, Dad is constantly worrying about Mom and threatening to walk up to Kula Hospital. The daycare has been a lot of help to us as he is in there Monday-Saturday now. The weekends are especially hard since all he does is ask when we're going to see her.

Not only that, but Mom has been complaining about chest pains. No doubt she is experiencing some kind of heart failure. She's been telling us that she's "dying and her heart is turning all black." She says she's too old for surgery, so there's nothing they can do. Of course this really upsets Dad and he starts crying. I don't think she is trying to be mean or anything, she's just trying to let him know that she's not going to be around long. On Thursday it was Dad's birthday and we took Dad up to see Mom.

When I asked the nurse about that the next day, she said she didn't know if she is hallucinating (her vitals have been stable). But it could be her interpretation of what she feels is going on with her heart.  

Today we talked to the doctor and she said she is definitely experiencing some kind of chest pains. Her EKG is changed. They've bumped up her nitropatch, O2 and water pills. They are drawing blood every 8 hours to see if there is any damage to her heart muscle. They won't get the results until tomorrow. After she got her nitropatch, she felt better.

I see Light at the end of ths tunnel

Well, it seems like there are more and more days that have no entries. I know part of it is that we are seeing light at the end of the tunnel and possibly also that everything seems to have become one big blur.

Dad continues to ask about Mom. We try to redirect him but some days it's just not that easy. I am just waiting to see how long this adjustment will take. I've heard that it takes a good month for people with Alzheimer's to adjust to a new situation or environment.

All I know is that having Ma placed in a nursing home and having Dad in daycare has been like a breath of fresh air. I feel that we can breathe a bit more now. I am sure in time, this too shall pass. On the weekends we try to take Dad out for leisurely drives. I think it does him good. We take him out to lunch or just go for a cruise. The hard part is anticipating his next (same old) question, "When are we going to see Ma? It's been a couple of days since I've seen her!" In reality that couple of days is really 17 days since we first took her in to see the doctor.

All in all, it's been a rough road, but then again, I believe DH and I have grown a lot, learned a lot and got closer to each other. The hardest part is not getting in the way (line of fire) and becoming part of the problem and not the solution. It's been humbling to realize our own impatience, intolerance and shortcomings. Ahui ho. Till next time. 

Transition

Monday, the 30th. We had had a nice weekend and everything seemed to go fine. About 2:30 we got a phone call from the Daycare. They told me that Dad was rattling the fence, reciting his marriage vows and telling everyone that he was going to climb the fence and walk to the hospital to see his wife! After determining that he needed to get his meds adjusted, "K" picked him up and we scheduled an appointment with the doctor.

Today was also the day that Ma was being transferred to the nursing home. We didn't get home till way after 8 from the clinic, and soon Dad was fast asleep with his new meds.

Today (Tuesday), the nurse at the Daycare decided to track him minute by minute, to prevent a repeat of yesterday's episode. Today he did fine. I called several times during the day, ready to dash downtown with some extra medication, should he need it.

I had a meeting with someone from the local Alzheimer's Association. It was very informative, and realized we had a lot to learn of this awful disease. I found out a few things: Never say No. Don't argue. Redirect.

A bit later I decided to call the nursing home to check on Ma to make sure she was doing OK. The nurse on duty informed me that she was very "sweet, very nice, and that she was watching TV in the Activity Room." Everyone seemed to be settling in to their new routines. No sooner had I thought that, when I received a phone call from a nurse at the nursing home. She told me that Ma requested to speak with "K." So I called him and gave him the number.

Later on he explained to me that they were trying to get a reaction out of her to see how she would respond by talking to one of the family members. The minute she got him on the phone, she began to whine for Dad and that she wanted to see him, etc. etc. Finally the nurse got back on the phone and explained this to K. She was "under no circumstances" see OR talk to Dad on the phone until they deemed she was ready. This may just be the hardest transition for both of them. But, I am confident, that after a few weeks or so, things will settle down. Let's hope so.

 

Catching Up... almost there!

It's been a while since I've blogged. In fact, I  haven't blogged once this past week. A lot of things have happened, and rather than going into each even into detail, I'll just summerize things.

Monday, 8/23: These were difficult days because Dad kept getting dressed and threatening to "walk" to the hospital. I was by myself and I had a difficult time redirecting him once he's made up his mind. Tuesday was a bit better a DH and his brother decided to play "daycare" and took Dad with them to the shop. That didn't work out too well. I had to go to Medicaid and drop off some documents for both Dad and Ma.

That afternoon both me and Dad had a doctor's appointment. Dad was getting very impatient having to wait at the clinic. The nurses even had to find me in one of the examining rooms because he was looking for me. All the while he keeps asking for Ma, wondering when he's going to talk to her, when we're going to visit. Later that day we found out that Ma got approved for Medicaid effective August 19th. Yay!

Wednesday, we decided to take him to the adult day care center. What a difference that made! At least we were all able to take a breather and get some things done. I applied for Kupuna Elder Care which provides free Daycare scholarsips and we were able to get 2 full days of Daycare free. All we need to come up with is 3 days a week.

Thursday K and I had to go to Maui Memorial to see the discharge nurse. We had to sign papers notifying us that there was a change in her health and that her normal medical insurance would not cover her stay in the hospital. That's OK, medicaid said they would cover. In the meantime, Kula had made a bed offer for Ma and she would be moved the following Monday. So far so good.

I want to take this time to thank all of the siblings and their kids for taking the time to call my FIL and keep him "entertained," while we worked on the details and met with social workers at the various hospitals. I will keep you posted.

Dad has an Episode

We heard from the cardiologist today. She said that "she thinks that whatever we've been waiting for is going to come through and that she will be placed directly from the hospital."

We were elated! But today posed a new set of challenges as we actually allowed Dad to call Ma in the hospital. He had been bugging us all weekend to let him talk to her. So we thought, just let him talk to her. We actually videotaped it. At first he didn't want to talk to her and even told us to tell her he was sleeping. They finally got to talk and we thought it went fine. We thought, that went well, so, next time, why don't we just let HIM call the hospital himself?

Well, time went by and once more he said he wanted to call her again. In fact, DH showed him the video of him talking to her and Dad insisted that that was not today. I was upstairs resting when I heard them raise their voices. I quickly came down and saw him all dressed up with shoes on, ready to walk downtown. I dialed the number and he called her for a second time and this time it seemed like she was barking out orders at him. She had him look for things for her and he ended up trying to find whatever items she was telling him to find.

I told DH, "I don't think I'll be able to handle him by myself. I think "K" should take him to daycare in the morning." My SIL in Oahu called just in time and was able to talk to him and calm him down. A little later he had a nice surprise visit from his son and that went well.

He then wanted to call the hospital again. This time I wrote the number down on a sticky note and told him to call and ask to be connected to her room. He did that and they were talking for a while. Everything went well until he found out that she had a peanut butter and jelly sandwich for dinner. He asked to speak to one of the nurses and spent a LONG time talking to them and demanding that they give hre a healthy dinner. I felt so embarrassed for him! But I am sure the nurses understood that he has dementia so they just patiently listened. This is not a good idea, I thought. What if he does this at the nursing home? I know they are not going to stand for that. So I took the sticky note out of his journal and decided that we need to monitor the calls.

One thing we had asked the hospital to do was to get a psych eval done. But when the Dr. returned my call later in the evening, she told me that that may jeopardize her placement into the home. They will tolerate dementia, but psychological and behavioral problems was another issue. We both agreed. We shall see what happens tomorrow.

Breathrough

At first, today consisted of a constant barrage of questions from Dad, even though we had explained everything to him the day before, showing him the letter we wrote and the note Ma had written.
"Is there any chance we're going to visit her today?"
"Have any of the siblings called her?"
"Can I call her?"
After a while DH got to the point where he already knew what he was going to say, so he just jumped ahead of him and mentioned what was going on. He seemed to take it easier that way.

I dialed his sister's number and he talked to her for a while. That was a good break. I asked him questions about his brothers and that seemed to take his mind off of things and calm him down.

I heard from the Dr who told me that it was really up to us whether we wanted to continue the Namenda & Aricept treatment or not. It costs $492 a month and the Dr said "Neither drug prevents progression of dementia. At best you get a one time increase in function level, then a continued decline. The decline in function rate is unchanged." I really think he needs to continue the Citalopram but I think the money is better spent in providing him daycare. So far "S" think we should continue him on the Namenda.

On another note, I wrote Mom's PCP and requested a psych eval for Ma while she was still in the hospital. 

We had a nice break in the evening because Dad went to church with "K." DH had tried to call the hospital twice but Ma did not answer the phone. So we talked to the nurse that was taking care of her. She was fine, watching TV.

Shortly after that we received a phone call from her. DH talked to her for a while and she seemed fine. It was clear to see that when she worked herself up, she would have a hard time breathing because of the fluid in her lungs. She knows that they are getting a "place" ready for her. How much of it she knows we don't know. They could very well just telling her that so that she has something to look forward to. At the end of the conversation came the best part. She was getting short of breath and had a hard time talking. The last thing she said was, "Just take care of Dad, okay?"
That was good. Yeah, God!

Alone with Dad

When we first woke up, DH decided we should write a letter to Dad to let him know what's happening to Mom. We had found a note she wrote entitled "Why We Need to Separate." She outlined that she can no longer live with him. So DH sat down with him, gave him the letter we wrote and attached a xerox copy of her note to tell him that she wanted to separate from him. He then talked to him and answered any questions he had about it. It went very well. Not sure if that was the right thing to do because he keeps asking about going to see Mom. We then show him the letter to "refresh" his memory.

Click on the picture above to see it at full-size to read her note.

My SIL, "J," advised me to talk to the social worker on call, which I did. Everything seems to be going as planned.


I really dreaded today because I would be alone with Dad. DH had to go to work and my son went camping. I just knew he would ask me over and over about calling or visiting her in the hospital. Things went pretty good.. We talked about his siblings and we talked a lot. Everything went well right until 3:45 when he asked again to see Ma and that he would start walking if I didn't take him. I must admit, I panicked a little. I called DH to let him know. Then I got an idea and called my SIL in Texas. I asked her to please talk to him and keep him occupied while DH was on his way home. That went well. It is a little tricky and nerve-wracking to keep him calmed down.

We received a call from the nurse at Maui Memorial who talked to DH for a while. I guess Ma had given her her "pitiful story." Apparently she has been calling my SIL "K," thinking that her son was home. She left messages to tell Dad to call her at the hospital. That is her MO. She drags him in and they conspire a plan, and they feed off of each other. But then, maybe only a half hour later, she gets irritated with him and wants to leave him.

Later on his other daughter from Oahu called but he had gone to bed already. We have to write things down in his journal, so that he knows that his kids really do call. So today went well.