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Any Suggestions Would Be So Appreciated


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Old 09-14-2014, 07:36 PM   #1
rufous57
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Any Suggestions Would Be So Appreciated

It has been a long time since I have posted on this forum. I am desprate for ideas.

Last summer DH and I moved MIL and FIL to be closer to us and into an Assisted Living facility. Not a great option due to her Advanced Stage Dementia and his Advanced Parkinson's and dementia associated with Park's. FIL passed in December,that's when we moved MIL to Memory Care Facility. She has done nothing but complain and cry ever since! She has DH's cell on speed dial and at first was calling at all hours of the day and night, disrupting him at work and middle of the night. He refused to disconnect her phone and would constantly run over there. She complains of strange men going into her room at night and using her bathroom! She complains that people are stuck up and don't like her. She says she and her "friends" are putting their money together and buying a house! DH tries to argue with her, I have told him it's the dementia talking but he sometimes thinks she is rational. DH had a stroke this past spring, he denied he was under a lot of stress due to his mother. Luckily it was a mild one but he has some physical impairments, but of course MIL has no clue. Lately, she is complaining more than usual, she keeps insisting he move her out of there ASAP. And asking if he talked to "those guys" I am seriously afraid she will be the death of us both. I don't klnow what to say anymore. I keep trying to tell DH this is the dementia talking and yet, he keeps trying to reason with her. I am desparate for suggestions as to what he can say to her. I am out of patience, I feel horrible but this wears thin on us both. I am worried for another stroke! To make matters worse, MIL is on pureed food as she already has aspiration pneumonia, but she wants solid food, which her DR says no way. With her memory loss, she still harps about wanting solid food!

 
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Old 09-14-2014, 09:57 PM   #2
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Re: Any Suggestions Would Be So Appreciated

Rufus, there is absolutely nothing you can do about your MIL. You are correct that it is the disease and will be what it is. You are also correct that your DH's attempts to appease her, argue with her, reason with her, will be the death of you both! He is obviously in denial as to the reality of the situation, or just does not understand the extent of his Mom's impairment. I remember those day!! Probably the toughest of the entire journey. Mom's logic was there, the intelligence was there, but the facts and the rational thinking was amiss. It all sounded good until you remember the true facts. You can argue with them until you are blue, and you will do it again tomorrow.

What I started doing was just telling Mom..... "I know this bothers you and I understand your frustration Mom. I will see what I can do about it tomorrow (next week, next weekend, next time I talk to the doctor, when I can find the director... you get it)!" Tomorrow never came. I told her the same thing every day. By telling her I understood her frustration and validating her feelings, it made her feel better. As if I was on her side. She had hope that I would do something to make it better.... tomorrow! Then I would distract her with ice cream, a walk outside, anything that would take her mind to a better place. If the subject came up again, I would just repeat what I had said before. I did talk to the facility about keeping her busy and trying to get her involved with activities and other residents.

As long as Mom is not agitated or aggressive, let it be what it is. She is not happy with the turn her life has taken. She is complaining about what she knows to complain about. Her brain is not telling her that she has a progressive brain disease that is slowly taking her cognition. Her brain is telling her that something is wrong and it has to be because of where she is. If you would just take her somewhere else, it will be ok. My Mom wanted to hire "Two Men and a Truck" to take her back home! She was fine and the rest of us were bonkers for keeping her locked up! I told her for months that I would check into it! It is ok for them to express themselves in this way. If Mom should become aggressive or agitated, then talk to the doctor about medication that can help.

As for DH... keep trying to educate him. Find whatever information you can to give him. Take him to a support group! If you can get him to a good support group, so he can hear the stories of others, it might help. This way he will find out that it is not just his Mom that wants to go home but every single resident of the locked memory unit! In all my time, I have never once heard a patient say they were glad to be there Check with the local Alzheimer's Association to find out where there is a support group you can both go to. My bet is, hearing it from others will help him more than hearing it from you 100 times.

Love, Deb

 
Old 09-14-2014, 10:14 PM   #3
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Re: Any Suggestions Would Be So Appreciated

Oh my goodness Deb, bless your heart for responding! That is exactly what I needed to hear! Why didn't I think of Alz Anon? Not that DH will attend, but I can! No, if I have to drag him by the ears, I will! Because you are so right, I can repeat myself 2 million times and he doesn't hear it!

Thank you so much for your reply- one thing that is making this harder, MIL has advanced CKD and now the Dr. is trying to cut back on all her meds. Would you believe, she still takes statins? But he had greatly reduced her Zanex and the other anti-depressant, plus I hate to say, she was on Oxy and now that she has been cut off, this has gotten worse.

Thanks a million for being here, Ruth

 
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scorptired (09-15-2014)
Old 09-14-2014, 10:39 PM   #4
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Re: Any Suggestions Would Be So Appreciated

Yes, drag him kicking and screaming to a meeting if necessary. Speak up and explain your situation and let him hear others talk about their loved ones. There are also some great books and videos if you can get him to read or watch them.

My Dad had heart disease. His first heart attack was at the age of 57. After his second heart attack he had 5 bypasses. He also had several stents put in over the years. He was diagnosed with Vascular Dementia at the age of 78. When he was about 85 his Cardiologist suggested that we stop all his heart medications. Bless Dad... he lived to be 90! So if the doctor doesn't think the meds are needed, let it be what it is. As for the Statin.... That is a bit controversial. If there is a history of cardiovascular disease the benefit to those over 70 might be warranted. But there is a long list of side effects that can cause problems, especially in the elderly. So extended use with no previous history of cardiovascular disease may not be warranted. Statins have been associated with the risk of muscular problems, gastrointestinal distress, liver deterioration, impaired memory, and possible diabetes. The benefits of statin have to be carefully weighed against all these possible side effects.

If the doctor has taken her off of Oxy, and reduced her Xanax and antidepressant, no wonder she is complaining My bet is she was over medicated before. If she does get to the point of aggression or agitation, the doctor might want to give her something back (not the Oxy!) Otherwise, just let her complain!

One thing I will say is that many with Alzheimer's can not distinguish between physical and emotional pain. It is all processed the same in our minds. Make sure it is not the physical pain, rather than something situational, that is bothering her. I would also have her checked for a UTI... just in case... especially if she is having bouts of incontinence or not getting enough fluids. If the behavior changes suddenly, a UTI is many times the cause. Colds, flu, sinus infections, and other similar infections can cause the same type of problem.

Hope you find a good support group in your area and DH will go with you! If not then you go anyway... and I would love to hear how it turns out

Love, deb

 
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rufous57 (09-17-2014)
Old 09-15-2014, 08:30 AM   #5
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Re: Any Suggestions Would Be So Appreciated

Rufous, ditto what Deb said! You're husband is feeling guilty and your MIL is agitated because of the disease. My husband has been in a home for 3 months now and I visit every evening and stay until he goes to sleep. A couple of the residents cry and complain to the staff about being kept against their wills and demanding they call their families. And, when their families come, it becomes an ordeal when they have to leave. Some even get mad because I visit my husband everyday and not them. They don't know me but, they think my job is to be with the residents. Your MIL's meds might need adjusting and maybe a mood stabilizing drug will work to calm her down. Good luck!

 
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rufous57 (09-17-2014)
Old 09-16-2014, 09:26 PM   #6
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Re: Any Suggestions Would Be So Appreciated

Hi Deb, Good news, we have been discussing this and DH has agreed, if I can find a support group, he will go with me and possibly another of our friend's, whose mother also has AZ. Went to see MIL today, I feel strongly that her meds need re-adjusting. I see why the Dr. cut out the oxy, but she definitely needs something for instant anxiety, like the Xanex or clonazapam. The whole time she kept saying she wants to come home, she wants DH to go and talk to "those guys" and she wants to go and live with her mother and father! She is 93, so you can guess her parents passed long ago. I remembered your dad had heart issues, in a way, I envy that the doctor's could identify the root cause of his dementia. No one bothered to figure out why MIL has dementia! She has taken statin drugs for over 40 years, I have always wondered if this hasn't been the cause of some memory loss, not to mention her kidney and liver problems! She has no history of heart disease btw. I just think too many doctors get paid to prescribe statins to all of their patients frankly! She does get checked for UTI, so far, she has not had that problem, but I do think it's time to talk to her doctor for re-evaluation. For sure she was over-medicated prior to last year in her own hometown. I cannot thank you enough for your time and input Deb. I truly thought I might be losing my mind too, thanks so much for caring enough to respond!

Hi Scorptired,
Thank you so much for your reply, I know you are right, DH has soooo much guilt over this, plus a lot of denial at times, as to her condition. I am so sorry about your husband, hugs to you! I know what you mean about the other residents as well, isn't that hard for you to visit your husband? When we visit MIL, she is always in the Common Room or the Main Dining Hall, and so we are never alone.

 
Old 09-16-2014, 11:14 PM   #7
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Re: Any Suggestions Would Be So Appreciated

It is hard at times because the staff as well as the residents seem to want to chit chat when I'm there. Going to his room is not an option cause his roommate is just plain irritating. He's 40 year old, obese, diabetic (but drinks coke and eats skittles all day), doesn't have anything wrong with him other than being diabetic, refuses physical therapy, doesn't want to get out of bed, demands everyone waits on him, would rather wear a diaper than go to the bathroom, etc... When the weather is nice, I take hubby outside to the courtyard to soak up some sun and get away from the constant interruptions.

 
Old 09-17-2014, 10:12 AM   #8
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Re: Any Suggestions Would Be So Appreciated

Rufous, having been through this journey with both my Mom and Dad, I just hope something I learned can help somebody else. Check the Alzheimer's Association in your area for their local support group. Hopefully there is one convenient to you in both time and place. Please give it three meetings before you decide to continue or stop going. It is difficult to get a good feel for the group when you are a first timer.

There he will learn that almost EVERY loved one living with dementia wants to go "home". "Home" may or may not be where you think it is. For your MIL it is back to a childhood home with her Mom and Dad. She told you that and you know it is impossible. What hubby needs to know is that "Home" is a place of comfort and safety, not a place, but a state of mind. With dementia, that state of mind is hard to find and is not dependent on a place. My Mom went through this for years. She was determined to go home to the point of packing daily and trying to escape. So I took her back to the house she lived in for 55 years with my Dad. She had no idea where she was and told me she had to go.... yes you guess it.... home!! I took her to the farm she grew up on. Yep, she still wanted to go home! So please try to explain to Hubby that "Home", to someone with dementia, is not what we think it is.

Sometimes when a patient is over medicated the doctor will stop everything or stop most and reduce the rest. They are trying to find a level that is optimum without over medicating. I do agree that she might need additional help but definitely not in the form of high powered pain pills. Talk to her doctor about her symptoms of anxiety. A medication that I now of that has worked well with other is Trazodone. It is actually a sleep medication that is given at night but a beautiful side effect is that it is an anti depressant.

I do wish doctor's would do a better job of diagnosing the cause of the dementia. Dementia is actually a symptom and not a disease. It is the progressive loss of cognition. It is similar to saying somebody has a fever. What you want to know is what is causing the dementia... just like what is causing the fever. Yet it is very difficult to diagnose what causes dementia. It is basically done by symptoms rather than test. Dad was misdiagnosed with Alzheimer's for years when in fact he had Vascular Dementia. His progression through the disease was irregular with long periods of no decline and declines directly related to cardiovascular events. He had delusion and his short term memory was gone but he retained reasoning and some logic. Mom on the other hand was accurately diagnosed with Alzheimer's through a Memory Assessment Research Service that specializes in Alzheimer's diagnosis. Her progression was classic Alzheimer's!

What is sad is that there are causes that are reversible and many of those are missed. NPH (Normal Pressure Hydrocephalus) causes dementia symptoms but with the appropriate shunt early in the condition the symptoms can be reversed. Cognitive decline can be caused by medications, low B12, and other conditions that we can test for. It could also be brain tumors or blocked carotid arteries. The list goes on. Then you have the many different causes of progressive dementia such as Alzheimer's, Vascular Dementia, Frontal Tempera Dementia, ... and many more. Each has it's own set of symptoms and different way to treat those symptoms.

It is good that you have tested for UTIs and continue to do so if there is a sudden change in condition. Also keep your eyes out for other infections because they will cause the same sudden changes. It could be aggressive anxious behavior or it could be lethargy and disconnected behavior. If things change suddenly in either direction... check for infection

I look forward to hearing how hubby did at his first meeting It will help to keep you sane as well. This is not a journey you need to do on your own. It is so helpful to have those that you can related to because they are going through the same thing close by I also recommend both a local support group and on online support group to help you through the rough spots.

Love, deb

 
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