First time on here!

SMCL

Hi... DW has started to not take her pills. She takes water and then pills but she just gargles them and then spits them out. I can crush the regular ones but not the Time Release. Any thoughts on this? I ahve many more questions but this is a good start. 

Rick4407

Hello SMCL.  I've had similar issues that changed back again to taking pills OK.  Check with her Dr's, some prescriptions are also available in liquid.  It could also be her conditions have changed. My DW took high blood pressure meds for years but her blood pressure dropped a couple of years ago and she now has low blood pressure.  Welcome.  Rick

michiganpat

Maybe try putting them in something that can't be gargled, like yogurt or pudding?

Ed1937

Hi Stephen. Welcome to the forum, but wish you had no need for it. If there is any good news, it's that you found a good one where people understand, and care for one another.

If there are no liquid medications that she can take, maybe you should ask your doctor about the time release again. My wife was on one (don't remember which one), and I was surprised when the doctor told me I could crush it to mix with something so she would take it. There didn't seem to be a downside for her.

SMCL

Thanks for replies. Doctor finally got back and said he will get in touch with the groups Pharmacist to check on what to do.  May take a while he said.

SMCL

DW today ate 1chicken nugget for lunch and 1 for dinner. Yesterday half a PBJ sand. She like the protein drink (choc) but has 1 container for the whole day. 

She asks for me to help her. I ask how and she says fix me and points to her head. asks why it is happening to her and says she must have done something wrong in her life. Sad Sad Days

MaryG123

That is so sad SMCL.  Hugs to you. O

Ed1937

Stephen, when they say things like that, it just tears your heart out.  I'm sorry.

Dio

SMCL wrote:

She asks for me to help her. I ask how and she says fix me and points to her head. asks why it is happening to her and says she must have done something wrong in her life. Sad Sad Days

My DH does the same. Constantly asks for my guidance, asks why is this happening, why now, wishes for a magic wand to make all this go away and we'd get back to the way were before he got sick...it's more than heartbreaking!

Hoot619

Welcome, you are in the right place here,  there are a lot of answers for the stuff we are going through with our LO's.  Hoot

jfkoc

My first chat would be with my pharmacist...they really know drugs  inside-out.

SMCL

Today gave her 1 egg scrambled and 1 sausage link.... Nothing- I don't like this. Made a half PBJ and she ate it...............That was it for the day.. turned away chicken nuggets, pigs in a blanket, cherry ice. 

I tell her she will end up in Hosp. w/ intravenous feeding but no comprende'

I saw a reply in this board about getting a Geriatric Psych ward evaluation and may have to do it. Not sure Meds are correct and she is not taking them anyhow.

SMCL

Last night sleeping pill at 8... 8:30 in bed asleep. 9:45 up and Raring to go.

2:15 am gave her another sleeping pill and she was out. 

7:15 am up and at-em... 

Not sure what to write after this

MaryG123

I hope you can both get some rest. It sounds exhausting!

Faith,Hope,Love

I would contact her doctor and let him know what's happening.  He may need to adjust her meds.  I'll be praying for you!

SMCL

DW put the stove on while I was in basement, heard the whistle and came up. Took off all knobs and hid them. While hiding them found a few forks and a spoon in a drawer. I checked her pocketbook as she said it was heavy, found a small alarm clock, note pads and the remote for the cable box. She then will not admit she did it, someone else did. She now goes to the stairs both up and down and calls my name out. I tell her I'm right here and she says I know I'm looking for Steve (Me) Asking about her mother more even though she died 13 years ago. Still not much food, gave her a dish of ice cream (her favorite) and she took 1 spoon and gave it back. PBJ is only thing she eats regularly.   Baby food I guess is next. Thanks for listening!

Herkstwin

You DW is displaying a lot of the classic symptoms, and that certainly keeps you on your toes and exhausted. You have my empathy, as I, and others in this forum are partner caregivers. I too see some of the behaviours. We are always playing 'hide and seek' with things she puts away. No amount of reminding DW of what she is doing will be of any help. Sorry about that.

Loss of appetite is common. Telling her that she could end up in hospital is of little help, since there is little to no connection between reality and her mind.

Best wishes finding the help you need to keep her as well as possible.

SMCL

Saw Doc Wed. and he asked how she is doing. Told him she is less anxious but is still scared. He was happy he got 1 out of 2 right, I guess. 3 words to remember -no answers. checked her reflexes- good listened to lungs and heart and said see ya in 3 months.  12-15 minutes at most. If we could get meds somewhere else, I (We)would be out of there. She has flopped or flipped and now wants to go home as soon as we leave the block. 10 Minutes is all she can wait - doc did want blood. went back the next day by appointment and wanted to leave at 10 mins. I got her to say 5 more but I asked the nurse when we would be called she had no idea she had just called 3 in front of us. A mother with a baby (well behaved) was on her way in and said we could go in and she would wait. Nurse said she had no idea what we were having done and didn't offer to go look so we left. Will try again another time.  Getting rough.

Gig Harbor

Would it be possible to get the timed release pills in a regular form and give her one in the morning and one at night? Then you could crush them. Also ask her doctor to reevaluate every medicine to see if it could be stopped.

jmlarue

I feel like a broken record - you're the 2nd person I'm suggesting a palliative care/hospice care evaluation to. From what you're describing on the food/medicine front, I wouldn't be surprised if she would qualify for hospice just based on weight loss. Many of us are not aware that our LO's can qualify for Hospice care just based on not eating and weight loss. It's not an admission that we think they only have 6 months to live. It means that they can be re-evaluated after 6 months - if they have improved, they "graduate" from the program (perhaps to Palliative Care). If not, the Hospice program continues to serve. They take care of providing all meds, feeding issues and helping with personal care. Having some extra helping hands and expert advice on med changes, diet, and behaviors can be a real godsend. My sister and I cared for our diabetic mother, at home, to her end of days. We absolutely could not have done that without the aid of Hospice.

Joydean

 I was surprised when you said the nurse had no idea what blood work needs to be done. You had an appointment, that’s very confusing. I would definitely be looking for a different doctor, someone that treats dementia. Do you have a psychiatrist working with your wife? 

SMCL

Sorry.. the nurse was just calling in people to the blood clinic. She had 3 other people's orders in her hand but not my wifes. We are seeing the neurologist and he is giving the scripts. I have a referal to see a psychiatrist and so far 3 were not taking new patients... Will keep trucking

SMCL

Thanks for the suggestion. Who would be the referral physician for Palliative/Hospice care. 

Steve

Jo C.

Hello Steve and welcome.   While a doctor's order is required for Hospice to begin, it does not take a physician's order for Hospice to come out to the house to do a screening.

Palliative care is one type of care, but it does not provide equipment, etc. at no cost.  Hospice is the entity, if criteria is met, that provides all equipment at no cost; one gets a bath aide two to three times a week,, an RN, a Social Worker and Chaplain if one wishes.

What I like to do is to look up local Hospice entities on Google. Then I contact two or three of them and ask the nice person answering the phone to transfer me to the nursing supervisor. If the answerer asks the reason for the call, I simply say it is "private," and that is honored.

I then ask the Supervisor questions re philosophy of care, availability, etc. and can discuss my Loved One (LO).  After speaking to a couple of Hospice entities I can feel which one would be the best fit. They will come out to the house and do a lengthy intake screening. If accepted onto service, they will start the same day or the next day; the Hospice RN will call and get the order to start from the doctor; you need not do that unless you want to.

Not all Hospices are exactly alike, some are more generous than others. I have found the larger Hospice entities better at a lot of things; the Mom and Pop organizations in my experience, not so much.

It seems that your wife likes her PB&J.   That is good protein and she probably enjoys the sweetness and the consistency.  Often, some of our LOs do better with finger foods and will eat more if the finger food is given in their favorite chair; sometimes in front of the TV. Whatever works.

One thing that happens very often that causes changes in behaviors, is that of the "silent" urinary tract infection.  These are called "silent," as there are no physical symptoms except for changes in behaviors; sometimes these can be subtle, other times more overt.  Good idea to have her checked for that.

There is a very good writing re dementia and why things happen when changes occur and dementia evolves; I will find it and Post it for you. Excellent resource for spouses and for family members.

You have found a good place for sharing and for information. We are all here in support of one another and  that now includes you too!

J.

Jo C.

Here is that link:

https://www.alzconnected.org/uploadedFiles/understanding-the-dementia-experience.pdf

J.

SMCL

I hired an aide through an agency to help with bathing and light housekeeping 2 weeks ago. First day we sat and talked and got to know her. 2nd day she tried to help DW get washed and dressed. She would have no part of it. This is a trial period. 2 days 2 hours. Tues. + Fri.  Well Tuesday no show, I sent text to agency, they will get back. Friday no show, called agency and requested new aide. They said they would try to talk to 1st aide. 

They called back and said the aide thought she was to get a text from them to come back the next Tues. It's Us! (When things go wrong, we say It's Us)

She is coming Tues + Fri. 4 hours to make up for last week. We'll see what transpires. 

Does anyone know what the housekeeping entails? 

TIA

Steve

Pat6177

Hi Steve, the agency that I use actually gave me a list of what “light housekeeping “ is and is not. For example, they will clean the toilet with a toilet brush but no scrubbing with a pumice stone. Vacuuming and dusting are ok. No cleaning that requires them to be on a step stool. She wipes down the bathroom countertops and sinks and cleans the mirrors. We have plantation shutters and she does dust them. They will strip the bed, wash the sheets and put them back on the bed. (I don’t have them do this so I’m not sure if there are limitations.) They will mop with certain limitations. I have a light weight steam mop that’s easy to use and she uses that. I had her wipe down the kitchen cabinets (not real dirty, mainly dusty.) Hopefully the agency can give you a list. Good luck getting a reliable person in!

ksgorr

Hi.  My first time posting.  My husband was just diagnoised 2 months ago with early Alz.  I am gutted to find myself posting on a Alz site.  Not a club I wanted to join.

My question is where do I start?  We live near Raleigh.  Doctors are at capacity.  I/we don't know what we are doing.  His neurologist said this is what you have, see you next year??  We did find a neuropsychiatrist that was initially helpful, but last time we saw him was rushed and we left there knowing no more than what we went in with.

I'm told to go to a lawyer and get our will/POA sorted, but I don't know who is good?  What doctors are we supposed to see?  Insert scream here.

ksgorr

I just wrote a long post and it's not showing up.  I tapped post...

jmlarue

ksgorr - Copy this post and then go to the 1st page of this Sprouse/Caregiver page and click on "New Topic" at the top of the page. Enter a title for your post and paste the body of your post below. It takes a little time to get the hang of navigating this forum. I you need help, just ask.

In the meantime, here's a few bread crumbs to follow on what to do and where to go as you learn to navigate these new responsibilities as caregiver:

1. You need to find a Certified Elder Law Attorney to help you get affairs in order with: Will, Durable Powers of Attorney for health care and finances, medical pre-directives, and advice and protecting assets and qualifying for Medicaid help if/when you need it to pay for long-term care. Google should help you find an appropriate attorney near you. Yes, there is a legal fee involved, but it is absolutely worth it to find some peace of mind in knowing your ducks are in a row. Those Durable Powers of Attorney are essential to speaking for and acting on behalf of your spouse as his protector and advocate.

2. Spend whatever downtime you have reading through this forum. Other people's experiences talked about here were an lifesaver for me. We all get thrown into cold water with the diagnosis of dementia. None of us fully understand what that really means or prepares us for the hard task ahead as primary caregiver. You'll get the best explanations here from other caregivers who have gone through it or are still fighting the good fight. Any questions, start your own post. Everyone is willing to help.

2. You should see the Neuro Psych doc as your primary contact for everything related to dementia. If you don't feel comfortable with that person or they just are not as responsive as you need, look for a referral to a Geriatric Psychiatrist. I think they are better educated on the care and medication choices for treating dementia.

3. There are online resources where you can read about the progression of dementia and be better informed on what to expect in the future. The book, "The 36-Hour Day" was the first one I was given through a caregiver support group. It was helpful. There are also YouTube videos from Teepa Snow that are excellent in teaching us how the dementia mind works (or doesn't work) and the techniques caregivers can employ to manage the strange behaviors of LOs as they progress in this disease.

4. There will be other who will weigh in to welcome you here on this forum and bring a wealth of information for you. Check in regularly and post any burning questions you have. All of us remember what it was like in those early days after diagnosis. The fear and uncertainty from knowing what you don't know can feel paralyzing. You will find help here from the group nobody wanted to join.

I'm so sorry you need to be here, but so glad you found us. We'll be here to support you when you need us. Just ask.

ksgorr

I am trying to post, but not having any luck.