Help Please(2)

banpaeng

Hi my name is Brian.  This is my first post although I have been reading for awhile.

I am tied up in knots.  My wife who has Alzheimer's since 2013.  I am her caretaker.  I have been able to hire someone for 6 hours a day.  However my wife is Asian so I am doing my best to keep her at home.

My problem is, I am at my wits end.  I do not know where to turn.  Like today we had a Dr appointment to get a referal to maybe get more help.  That sent her into the crying fit later in the day.  She does not realize how bad she really is.  I can not tell her she can do nothing by herself.  She also go-go-go all day long.  She always wants to help me or the lady helping us.  However it is very difficult as she  messes up and it takes us twice as long.  Not wanting to hurt feelings, we say nothing.  She gets upset if I go into another room to watch TV but she can not follow 30 min shows much less a movie.  She watches Thai TV and verity or game shows.  As you do not have to follow the plot, it works.

I am sure i will write more but that is all for the night.

M1

Hi Brian, glad you found this forum, there are plenty of folks here who understand. I'm glad you have some help at home, do you have other family support? Would adult day care be another possibility? Might give your wife a chance to socialize and give you a break at the same time.

ebplionis

Hi Brian, 

I was thinking an adult day program as well, although I know a bunch are closed during Covid, it might be something to look into for when they re-open. 

Also, depending on where you live, there might be some great culturally competent & relevant services offered by the local Thai community.  For instance near me there is a large Korean community, and there is a special Korean community services center that offers volunteer support to the elderly, as well as activities.  

Iris L.

banpaeng wrote:

She does not realize how bad she really is.  I can not tell her she can do nothing by herself.  

She gets upset if I go into another room to watch TV

Welcome Brian.  Your wife has anosognosia.  This is a characteristic of dementia in which the PWD (person with dementia) does not realize how bad she really is.  You described it perfectly.  She truly believes she is fine.  If you try to convince her otherwise, she will become upset.  The answer is to learn work-arounds from the members here.  There is a lot to learn.  

Also, your wife may be exhibiting shadowing.  She truly needs to see you.  If you are not visible, she may think you are gone completely, not just in another room.  Members may have some suggestions about this too.

Keep reading and posting questions.  Members are very knowledgeable.  

Iris L.

Arrowhead

I describe my wife as a 5 foot tall 3 year old. Your wife still has the intelligence of an adult, but in many ways she has the mindset of a young child. Take your clues from her. Use what works and disregard what doesn't. You will find a way to get through this.

banpaeng

I want to say thanks for encouragement and ideas.  I do appreciate it.

The nearest Thai Temple or area is over aa 100 miles away.  I would take her but she does not want to get out of the house.  I do try to go to "Chinatown" in Houston once a week.

She does not and will not go to an adult day care.  A bit of background will help with this.  In Thailand the family does the taking care of elders.  You can take the Thai out of the country but not the Thai ways.  We have been married for 48 years.  She is afraid that I am taking somewhere to leave her.

Today has been pretty good so far.

Again Thanks.

Jo C.

Hello Brian, and a very warm welcome to you.  I am sorry for what is happening and can understand your concern and the stress this is bringing.  Cultural issues are very important and you are doing the best you can at this point in time.  Your wife is blessed to have such a caring husband.

As mentioned, your wife is no longer able to process or understand she has a problem issue; it also sounds as though she has sepration anxiety and is "shadowing" you to maintain a feeling of security; this is quite common for many of us.  There are medications that can help, and a dementia specialist can be of much assistance in this regard.

Your wife shadows you and she wants to "help."  How about assigning her some chores to do so she thinks she is helping you and the helping person?  One could give her towels or laundry to fold; even if she does it badly, it keeps her occupied while you and the helper are working. Or; she could be given one of those swiffer dusters to dust the furniture, etc.  You get the idea; keep her hands and mind busy with smaller things so she feels she is helping. She still has the inner feelings of being the wife and doing chores, and she is helpful; so finding smaller work arounds for that would be a good idea.

As for the TV when she is sitting with you; she can be given small things to fold, an easy puzzle if she is able to do that, a box of small pretty things she can look at and fuss with while you are watching TV; or perhaps a snack she likes can also help to give you some respite for awhile.  She obviously needs to be near you for her feelings of security's sake.Her dementia specialist can also prescribe medication that can assist with her anxiety related to her dementia.

As for Adult Daycare; there are different ones and all are different from the other. It is good to get out and screen them without her when they are fully open again.  IDEA:  Some here have had LOs who also did not want to go to Daycare, so the spouse said they were going to go to the "Activity Center," and the healthy spouse went with the spouse with dementia.  This continues on for several weeks, then the LO adapts to the setting. In many daycares, they let the person with dementia think they are working there if that is something that helps them; so your wife can even be given little responsibilities to occupy her too.  Then, as the LO is adapted and feels secure, then the healthy spouse can begin to let the LO be at the center alone for a time and then increase the time you are not there until she is fine being there herself without you.   Just an idea.  The socialization can be helpful.

Do you have a dementia specialist as well as a primary doctor?  That can be helpful in managing difficult problem issues. Our primary care MDs are wonderful with so much, but they are not on the cutting edge of dementia management; this is important especially when it comes time to making an accurate diagnosis for the type of dementia present which is important as meds for one type can be contraindicated in another; and often, there are meds that can help our LOs with their distress.

Sometimes, in fact many times, it becomes important not to mention to our Loved One (LO) that they have dementia or a memory problem issue.  Because some of our LOs cannot often process this fact, nor do they have the ability for using good reasoning, logic or judgment, this being up front with their diagnosis can often bring upset to the LO.  If I mentioned in any way that my LO had a memory problem or heaven forbid, mentioned the word, "dementia"  or "Alzheimer's" to my LO, she would go ballistic in upset, so I had to be careful.

Many times, as with my LO, it became the kindest and most effective thing to use kind fiblets instead of bare truth to comfort and to get things done.  If we went to the dementia specialist, (an excellent Neurologist who sees dementia patients as a routine part of his practice), we instead used a therapeutic fib and said it was for a, "check up," or for her blood pressure, or back pain, etc.  That was more readily accepted by my LO.   We of course clued the doctor in to this.

It became important to never tell her about her doctors appts. too far in advance or she would become distressed and resist.  Instead, she would be told a few hours prior to the appointment when it was time to get ready that we were going for a blood pressure check or back pain visit, etc.  You get the idea.  Sometimes, it also helped to say that after the blood pressure check, we were going to get a treat or go to lunch, or have a treat at home; etc.; then be sure to do so; this also helped. We put focus on the "treat," and kept our own manner of speaking very positive and looking forward to the treat.

It is important for the doctor to know what the changes or problems are with cognition, function, behaviors, etc. at each and every appt; but it was often difficult to talk in front of my LO as it was greatly upsetting to her.  So; what I did was to write things down in a succinct memo and get it to the doctor prior to the appt., or have it with me to give to the doctor when we arrived for the appt., this way he had the information he needed to do an adequate exam and prescribing, and it kept my LO from being upset by what I was saying. I did this with every single appt. with all doctors.  We had our dementia specialist for all things dementia including prescribing helpful meds and our primary care MD took care of the other physical issues for health.  That made a good care team as things evolved.

While we can Post on any and all Forums, I would also like to invite you to go to the Spousal/Partner Forum and Post your issues there too.  There are many male caregivers on the Spousal Forum and lots and lots of input on problem issues. Always good to have as much input as possible.

NOTE:  The Alzheimer's Assn. has a 24 hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a, "Care Consultant."  There are no fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive of the Caregivers, have much good information and can often assist us with our problem solving and planning.  One can call as much as one wishes or needs to, they are always there to help.

 This is indeed a difficult situation; I so hope there are times when the helper is there that you  can get out for an hour or two to get some time to yourself; not easy, but you too need relief.    It is good to remember; there is no perfection in all of this, there is just the best you can do under the circumstances with the challenges at hand.  You are a very good and supportive husband, and I send you very best wishes.

Don't forget to take a look at the Spousal/Partner Forum, you will also find much help there and will find many men who are also caregivers for their wives.

J.

MN Chickadee

You can't call it adult daycare. When my mom finally took to it she thought she was volunteering or working there. Perhaps you "volunteer" at the "senior center" together for a few days, and slowly you start excusing yourself for lengths of time. A day program is still a way of caring for her; it could be a resources that allows you to keep her at home and care for her long term. It was a life saver for us. You can't use reasoning or logic or expect her to follow decision making or be involved in decision making. That part of the brain is too damaged. You find work arounds and ways to finesse situations. Therapeutic fibs to bring the most comfort and do what needs to be done. This is what the disease requires. You have to work behind the scenes on medical appointments, bringing in help and all kinds of things. It will only bring her needless anxiety to involve her. Find resources and make sure you get respite, otherwise you  run the risk of burning yourself out. You are no good to her if you are sick or worse. Take care of yourself too.

eaglemom

You might try contacting your local ALZ Chapter. They probably have some virtual programs that she could participate in. 

eagle

banpaeng

Again I want to say thanks.  I have gotten more info and advice I can use in the last two days here than Doctors, Etc, than is the last 8 years.  I would like to keep reading, listening and posting.

mariawotters

glad you found this forum