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Old 09-14-2011, 04:20 AM   #1
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Grandpa's dementia got the best of me!

It has been awhile since I visited the boards and I do so miss the support and advice I was given. This time around, I saw myself give up on somebody I care about and once enjoyed being around. I thought I was strong, but I am not.

My fiance's grandfather was showing rapid decline in his abilities both cognitive and physical after a series of surgeries last year. I once suspected he had dementia (as I studied this in school) but could not convince my fiance who was sure his grandfather was just "weird".

Recently, I noticed an unusual odor coming from my grandfather. Knowing he does not bathe, it came as little surprise. But this odor was strong and foul. It would not go away. I confronted my lovely hubby to be with an ultimatum - Doctor appointment for his grandpa, or I walk out. Being the go getter that I usually am, I had already set up an appt for a Geriatric Assessment. My fiance agreed to go along with the plan. I tried politely to convince my grandfather one on one he needed a visit to the Dr. I even bargained with him. I told him if the Dr agreed he was in good standing, I would never ask him to visit the clinic again (although I would) he then proceeded to yell that my fiance and I do not care about him and we should all cut ties and 'go our separate ways'.

After a long talk, my fiance and I agreed to come on more strongly "we will go to jail if you don't do it" we told him. And like that! He agreed.

Not only was the odor abnormal, it was the result of a serious infection that almost led to amputation. To my horror this old man had wrapped both his legs swollen and wreaking of infection drainage, in garbage bags with tape to conceal the smell. But he failed his assessment horribly.

Although the social worker was nothing but helpful and encouraging she did not hesitate to inform us he was in fact demented. He failed his tests miserably and she was not surprised. His ability to remember simple sentences, finish stories, or answer questions was a clear indication of just how lost his mind has become.


For the couple weeks after the hospital stay and confirmed diagnosis of dementia, I tried to work closely with my grandfather and the social worker. Not only were we able to obtain medical POW, we were able to draw up a will. Unfortunately, we have not yet received financial POW and this has lead to even more problems.

Recently, we were told to cut back the amount of salt in take in my grandpa's food. His food being TV dinners. This did not go well and he has continued to eat 6 -7 dinners a DAY all which contain at least 36% sodium. He says to buy a TV dinner with less salt would raise the price from .99 cents a dinner to 1.99!

I was asked by a nurse why I do not prepare home cooked meals for him. For one thing, I know I am not the only caregiver who has tried to prepare a wonderful yet healthy meal only to be told "take this away, I do not like it". How many times I have asked for his input on lunch and dinner ideas only to be met with "I'm not hungry for this or that".

A foot stool was encouraged by the physical therapist. Alleviating the legs would also diminish the swelling and soreness. "Anything over $5 is too expensive!" he demanded. Finally, I pulled a $20 out of my own wallet to buy a comfortable and stylish ottoman that he sits his dinner tray on while resting his legs on a home made cardboard foot stool!

The stove, which is over 20 years old is dirty both inside and out. It is a miracle it still heats up to boil an egg. The numbers on the dial are worn away so I am never sure what temperature I am cooking on. Is it too high or too low? There is a great burning smell and amount of smoke no matter what I prepare. It would be wonderful to buy a used stove that is in better working condition.

The kitchen sink does not work either. It serves as my grandfather's food disposal. Yup! Despite my constant plunging and scrubbing, disinfecting and asking, he still dumps food down the drain of the broken kitchen sink. Not only does it produce build up and rotten odor, we now have at least 10 pet flies that buzz around the sink all day and night. They've even spawn their own offspring!

Most importantly, our shower is broken. The bath tub houses dirty paper towels and used toilet paper that instead of flushing, he hides in the broken bath tub behind the 10 year old shower curtain. Though my fiance and I have both filled up commercial size garbage bags on separate occasions to clean it out, somehow it becomes full again. I most recently ripped down the curtain as to say "Im aware of what you are doing".

The bathroom sink, which thankfully has running water - is where we do our dishes and shower. Yes, I shower in my bathroom sink. Wash the hair, shave the legs, shower. When left unattended for the day, my bathroom sink becomes full of colorful and sticky liquids. Small food particles, wet toilet paper and spit. Mhm. Always nice to have a loogie in my shower/ dish sink.

It is awfully hard to take care of someone who refuses to spend a dime on his own home so he and his caregivers can live more comfortably. Is this the dementia preventing him from coming to that conclusion? Wouldn't a normal person realize a kitchen sink is for dishes and a bathroom sink is not a shower? This is why we would like to seek financial POW so we can make repairs to his home.



Well, this is how I finally lost it. I was sitting downstairs with him one night talking about the poor conditions of the home. I told him nicely that although it was a nice home it needed badly to be updated. I stated to him the above for my reasoning. His response to me was "I don't need that stuff".

Immediately I saw red! Of, course, YOU don't need that stuff. YOU have ME to do your dishes. I am the one who has to creatively scrub dishes in a tiny BATHROOM sink. I am the one who has to creatively shave her legs and wash her hair but only after first cleaning out your spit and mysterious liquids from the sink that is also my shower.

But all I said was, "Ok, pap, fine. Don't get the repairs, it just makes it harder on us to help YOU out".


Later, when my fiance came home, I noticed he didn't come upstairs straight away. When he did, he didn't look too happy. "My grandfather told me you tried to force him to give you money" "Why would you ask him to give us money?!" I was shocked. When at any point since knowing this old man did I ask him for anything more than an aspirin or an alka seltzer to help swear off a slight cold???????


"That's it! Im not doing this anymore he is on his own! Im not cooking or cleaning or anything. Ive had it with him. He is a liar and hes selfish. I want to move!" And I meant it.


Why the money comment bothered me so much was not so much his lie, but the questioning from my beloved. Then I thought of all the people who often ask me, "why not pay for the repairs yourself?" Hmm, my answer to them would have to be, the repairs in total for that house to actually be live able, over $10,000! The wiring, water, flooring, pipes, pest control, etc cost more than I can afford to spend. My grandpa watches re runs of DOH and Sanford and Son all day and pulls in half my monthly income!


My fiance and I are currently paying monthly bills, student loans all while saving for our own place (which will also require the purchase of furniture) so there is NO money left for us to put into my grandfather's house.

I understand he is ill and may not understand what he is causing us to go through, and we may have a great social worker who wants to help, but I am done. I can no longer make sacrifices for someone who thinks so little of my time and help, being there at his beck and call that he cannot do something as little as pay to fix the kitchen sink and bathroom shower as a small but huge favor.


Many would call me selfish and immature, but I have spent the last year and a half trying to be a companion, chef, nurse, maid, and errand girl to this man. Without so much as a verbal thank you, small acknowledgement of a job well done it is hard to want to continue my service.

Although it is not at all bad, at times he is a thoughtful and charming human being. I just cannot tolerate his behavior any longer. His refusal to practice a healthy diet, the constant defiance of putting old food down the broken sink drain, spitting in the bathroom sink and throwing dirty paper towels into the bath tub, refusing to make necessary home repairs even with the encouragement from professionals to do so, Ive had it.


How do I keep going? Should I keep going? If I no longer want to be there, should I be? Would I only end up making things worse between us?

How do I work through the stress of taking on this role to my partner's grandparent? Who can I turn to for help? When is it my turn to be a wife and mother and not a nameless helper to a demented old man?

Should we try for assisted living?


Any thoughts?

 
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Old 09-14-2011, 06:44 AM   #2
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Re: Grandpa's dementia got the best of me!

what does your fiance think or is he leaving all this up to you?
does he have any siblings who could help out?
i'd say it's time for more help, one way or another....assisted living is an idea.....

 
Old 09-14-2011, 07:43 AM   #3
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Re: Grandpa's dementia got the best of me!

RLCS... what you described is dementia. Dementia is not just short term memory loss. It is the loss of the ability to reason, empathize, and see things as we do. Grandfather does not see the house as you do. To him it is ok. He does not see what you are doing for him. He doesn't even see that he has a disease that is robbing him of his cognitive ability to understand. What he told your fiance is what his brain understood from your conversation. He missed the part about the house being in shambles and only remember that you wanted something that involved money. Therefore you ask him for money. From all that you have said, your fiance is not as clued in as you are. Therefore he is going to listen to grandfather and ask about it. I do hope your fiance understands what really happened and not what grandfather said. You have come a long way with the diagnosis and the social worker. You have done good thing.

What you can not expect is for the grandfather to understand or appreciate anything that is happening in his world. You are expecting a rational cognitive reaction from a demented patient. What you need to expect is demented behavior and that is exactly what you got. Grandfather can not do anything differently.

Yes, there are times when you are going to get mad, angry, resentful, frustrated, even guilty. This arises from our expectations. It is normal for us to expect reasonable social behavior from others. But in the case of dementia we have to change our expectations because the patient with dementia (grandfather) can not change.

If you have one bathroom that you use and you don't want grandfather in it, then hang a curtain over the door. More than likely he will not recognize the curtain as an entrance and stay out of the bathroom. When you are not in the kitchen put a white dish pan the size of the sink into the sink. Then when he throws food in the sink you can just lift out the dish pan and throw it away. You an go as far as take a permanent marker and draw a drain in the middle. Take a couple of knives and prop the dishpan up off the bottom of the sink so the sink will drain away the overflow from the pan. Be creative in way to remedy the problems rather than expecting him to change what he is doing.

As for the salt intake and the foods he prefers. I know it is health to do certain things but you are not working with a rational patient. He is obviously accustom to eating those TV dinners so that is what he is going to eat. It is better for him to not eat or to eat a little bit more salt? He pays for the groceries but who buys them? Is he still shopping? If the lower salt versions just appear does he truly know the difference. Perhaps you can save the trays and put your food in the same trays.

There are times you have to be creative in what you do. You can't keep crashing into those walls that grandfather puts up because he will stand his ground. He knows he is right just like you know you are right. But the benefit you have is his short term memory and ability to reason is limited. Instead of confrontation... try just going around the left end and doing it in a non confrontational way?

I will say again that you have come a long way. You have done wonderful things for grandfather. I will also say again that he is incapable of giving you the appreciation and validation that you need. You have to give that to yourself, get it from your fiance, or get it here. You are NOT going to get it from grandfather because he is doing the best he can within the dementia that he has. The quicker you learn to expect demented behavior from the demented the better off you will be

As for a care facility.... YES YES YES YES YES. The conditions all of your are living in is deplorable. It is not good for him or for you. It will not be an easy step. I am sure grandfather is going to be dead set against it. Your fiance will have to be convinced. It's not even about you and what you are dealing with. It is about grandfather and what is best for him. He needs a better place. You all deserve something better. You have done your best in a bad situation and don't feel badly if you can't do it all. It's an overwhelming task. You need to at least investigate the possibility of finding a care facility for grandfather. Have a conversation with his social worker about what is possible. We all need hope and perhaps this will give you some hope

Remember... you can not control how grandfather reacts. He is going to act the way he does because his brain is damaged. The only thing you can control is the way you react to him. Know when you reach your limit and then find another solution... even if that is a care facility. Also remember that this is about what grandfather NEEDS.... not necessarily what he wants. He is incapable of knowing what he needs and he is not going to appreciate what you are trying to do. This is just the way it is. Beyond all remember that you have done good things, wonderful things, and you can't do it all alone!!

Love, deb

 
Old 09-14-2011, 11:04 AM   #4
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Re: Grandpa's dementia got the best of me!

Quote:
Originally Posted by rosequartz View Post
what does your fiance think or is he leaving all this up to you?
does he have any siblings who could help out?
i'd say it's time for more help, one way or another....assisted living is an idea.....
Hello Rose, thank you for the response. Unfortunately, grandpa's relatives choose not to be involved with him. Not even so much as an occasional phone call. He literally has my fiance and myself. As for siblings, my fiance has a sister but she is tied up with a full time job and two kids. We obviously don't expect her to juggle a demented old man into her schedule. We have come up with two scenarios

1. Grandpa goes into an assisted living home where his disgusting habits and gross environment only affect him, while he is able to receive aide from a professional.

2. We move out and hope grandpa realizes he is not able to live alone or maintain his home any longer without us. Not as cruelty or punishment, but because my fiance and I would love our own space and a peace of mind.

 
Old 09-14-2011, 11:07 AM   #5
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Re: Grandpa's dementia got the best of me!

out of those 2 options, please pick number 1

 
Old 09-14-2011, 11:19 AM   #6
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Re: Grandpa's dementia got the best of me!

Hey Deb, thank you as always for your honesty, advice and support! I could really use it right now. Of, course, I am not delusive about grandpa's mental state and cognitive limitations, I just wish sometimes the old man I used to know would stop by even for a quick visit. I never want to sound unkind or irrational but as you said our living conditions are deplorable. When I pictured being engaged, it included a cute little apartment with two occupants. Instead I have a 50 year old house with 25 year old appliances and furniture and a grandfather that is more like a uncooperative 5 year old!


Whenever we act, we do it with the best of intentions for grandpa's benefit. I do not let my emotions guide my decisions when it comes to his needs or safety. We continue to fight with him to see a Dr because if he is going to continue living, we want him to do so comfortably. And I know he likes to feel he is capable to care for himself so we try to fix his health problems so he can do what he is still able to without assistance (use the bathroom, get dressed, make a tv dinner). We have booked him an appointment to get hearing aids, we tried to get him in for eye surgery but he refused so he is almost completely blind by his own will.


Ideally, my fiance, his sister and I would love for grandpa to be in an assisted living place so he could have his own space to do what he pleases while also having the necessities and professional assistance. Not only would it be more safer and healthy for him, but he would still be able to feel independent and in charge.

I won't lie, it would also be nice for us as we could have our own place free of illness and chaos, while focusing more on our relationship and not the baggage that comes with it.

I do feel I am at a limit where I am ready to throw my gloves in and sit back to watch. But I will not leave my fiance like that. I know it is hard for him enough as he does not fully understand the disease and what it means. He also has a harder time standing up to grandpa as he was raised by mama and pap. I have the benefit of understanding dementia.


I do think there are more creative ways to combat his poor yet unintentional misbehavior but I don't think I should have to go through the trouble. I will. Because I love my fiance and I want the old man to finish his days of comfortably with family who care about him.

I really don't want to feel like a bad person for saying I would prefer a professional take over.

 
Old 09-14-2011, 11:25 AM   #7
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Re: Grandpa's dementia got the best of me!

Quote:
Originally Posted by rlcs22 View Post
I really don't want to feel like a bad person for saying I would prefer a professional take over.


you're not! please don't ever feel like a bad person!
wanting a professional to take over would be in everyones best interest!
if doesn't meen you failed, it means you succeeded in getting him the help he needs!

 
Old 09-14-2011, 01:18 PM   #8
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Re: Grandpa's dementia got the best of me!

Quote:
Originally Posted by rlcs22 View Post
I do think there are more creative ways to combat his poor yet unintentional misbehavior but I don't think I should have to go through the trouble. I will. Because I love my fiance and I want the old man to finish his days of comfortably with family who care about him.

I really don't want to feel like a bad person for saying I would prefer a professional take over.
I believe we have said many times here that your grandpa needs professional help. Again, it is not "misbehavior". It is the sickness. It is part of dementia.
A nursing home for the dementia is a place where all things are dementia-friendly so that the elder can get proper cleaning, proper food, proper activities with peers and proper medical attention. A nursing home is NOT a place for his "bad habits". It is a place that will make sure his bad habits get corrected via medications or caregiving.
Again, it is not his own doing because he is sick and he does not know what to do with himself.

The option that you said to leave him alone is not an option. An elder like that cannot be left alone. He will never "repent" or change. It is his sickness.
Please consider a nursing home for dementia people.

Take care,
Nina

 
Old 09-14-2011, 02:51 PM   #9
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Re: Grandpa's dementia got the best of me!

RLCS... in no way are you a bad person for wanting a life of your own!! A normal life with you and your fiance without the burden of an aging house and an aging grandfather. That is a lot to put on a new relationship. One thing for sure.... if you and your fiance survive this you will survive anything There comes a time when professional help is needed. There is nothing, absolutely nothing, wrong with admitting that professional help is needed. Actually, more time than not, it is the right decision for the right reasons rather than something bad or selfish. I am not sure why we tend to feel guilty because we are not super humans that can do everything for everybody at all times. Knowing our limitation can be the best thing we can do for others and ourselves.

Leaving grandfather on his own is not a good option. He will just spiral down into a situation much worse than he is now. If it is necessary to place him in a care facility then so be it. It is the only other option.

We all wish that our loved ones would stop by occasionally and let us know that they understand and appreciate what we are doing. It's like wishing for the lottery on that elusive wishing star. It is very rare. We have to get our validation and satisfaction from other sources because our loved ones with dementia just can't give us what we need from them. Know in your heart that you are doing what is best. Pat yourself on the back once in a while. Get validation from your fiance if possible... even if you have to ask for it. And know that validation can come from here because we see what a wonderful job you are doing in such a very difficult situation.

As for the eye surgery... you do NOT want to put a loved one with dementia under anesthesia if at all possible. There are too many that just don't "wake up" mentally. Beyond that the visual input is not the problem... it is the visual processing that is disrupted. Even if he can not see well... would he be able to process what he sees after surgery? As for the hearing aid.... I went that direction with both Mom and Dad. Dad received his hearing aids before dementia and he did wear his. He did a little better with them when I could keep them in his ears. He was not able to maintain them, adjust them, or keep them functional on his own. So learn all you need to know to do it yourself. Mom on the other hand refused to wear hers. She received hers after dementia and they were "new" so she would take them out and stomp on them! I do know that hearing is not her major problem. It is her lack of auditory processing that is the problem. It's not what goes in the brain but what the brain does with it. She hated them to the point that they now reside in the med cart 24/7/365. She is much happier in her quietness. They have not been in her ears since the fourth time I had to have them completely refurbished because she destroyed them. Remember, new is not better. They do not have the short term memory to "learn" how to accommodate new. You can try but just know that it might not work.

As for being creative... none of us should have to go through this disease but we are. It is what it is and if being creative will make it a little better or easier than so be it. We can't fight against it, make it go away, or make it different. Yep, it is what it is. So we have to be creative in finding ways to make our life a little easier rather than wanting it to be normal. We are all stuck in a demented world that doesn't fit our sense of normality and we have to expect just what it is rather than what we wish. If a dish pan keeps the drains clear... it is easier than unclogging the drains while we are still dealing with the same behavior. Back to the fact that our loved ones can't change so we have to.

I remember going in and fixing up Mom and Dad's room so nicely. We took many of their favorite things and it was a show place! For over a month, every time I walked in Mom had destroyed all that we had done, packed up her favorite things in any container she could find, and threw much of it over the fence so it would be there when she got out to go home. For a while I would put it all back and repeat tomorrow. I worked myself into a tizzy trying to keep it like I thought she might want it. Then a light bulb went off. If it went over the fence, I put it in my car and brought it here. If it was packed up and was not necessary it came home with me. Her double room was stripped down and she finally moved into a single room. I took her to the geriatric behavioral med unit and have her medication adjusted. It was only then that she finally settled down. She has her bed, a dresser, a chair, and 7 outfits of clothes. Less was better for her. I learned quickly that I had fixed her room for myself instead of her.. now she has what she needs and we are both happier

Also know that in many ways, as it gets worse, it does get better. As Mom slipped further into her Alzheimer's there was less connection for her to grasp and fight against. Now, 2.5 years later, she could care less what is in her room because she only sleeps in there. She doesn't know if that lamp is hers or belongs to somebody else. She is familiar and comfortable where she is. Her memory of home is very infrequent and fleeting. She no longer fights against what she no longer knows. So hang on, be creative, take time for yourself, and remember to breath

Love, deb

 
Old 09-14-2011, 05:32 PM   #10
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Re: Grandpa's dementia got the best of me!

Deb is right, the surgery is not something easily done for an elder with dementia.
The elder forgets a lot so the aftermath of the surgery will be lots of problems for him. He would pull all the tubes and mess with the dressing. He would not remember how to self-care. Someone else has to tell him how to do it and he would not even understand. Depending on the level of memory loss, the minor surgery can be done only if the care is minimum.

For example, my FIL who had moderate AD in 2007 had hernia op. twice. It failed the first time because he would not remember he had pain on the scar so he sat down forcefully and hurt the scar. So he had another hernia op in 3 months and we got him a better couch so he did not hurt his scar badly.
This is the last time he could do any real operation. As time goes on, his memory loss got worse and he pulled his IVs all the time in the hospital. The last minor procedure was done last year - it is a local same day therapy on his private part. Long story short, he didn't understand it and begged to let go during the process for 20 minutes or so. Afterwards he took lots of caregivers' time to make sure his urinary catheter was OK. Now he fortunately is not bothered by these conditions badly.
However now with stage 6/7, he can no longer have any minor surgery because he does not understand anymore and the pulling of tubes is dangerous too.

If the grandpa could not even take care of his leg sores and even wrapped it up, he cannot do any surgery because he cannot self-care. He no longer understands why you need to do certain things. By the way, it is common for the elder to play with the wounds like that as they don't understand.

About the old appliances like stove and etc, he told you he does not need it because he really does not understand it anymore.

You need to realize that he is so incompetent that someone has to be nearby to take care of him and you cannot reason with him or argue with him anymore.
The professional caregivers know how to talk to him gently and etc. Also the outsiders may make him listen to them because they are not family.
The elders sometimes put up a face to be nicer to outsiders.

It is not uncommon that he thought you wanted money after all those talks and told your fiance otherwise. He can lie or trick anyone to make himself look good.

All these things are part of dementia. He is quite sick now so you have to give up on reasoning with him at all.

Take care,
Nina

Last edited by ninamarc; 09-14-2011 at 08:48 PM.

 
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