RSS Feed Print
Need Advice
cicihep
Posted: Tuesday, June 16, 2020 4:53 PM
Joined: 6/16/2020
Posts: 7


Looking back my sister exhibited signs of memory loss at least 2.5 years ago. Today she can't work, drive, or cook. She just turned 61. Her husband (my brother in-law) is IMO slow rolling her appointments and much needed diagnosis. She has seen a neurologist. He suggests a series of tests. Some cognitive and some images. She has done a speech therapy session. In his defense, my sister resists going to these appointments and he doesn't want to upset her. So he makes an appointment 2 months out, then cancels. We've been doing this for 1.5 years. I am not local, but my brother is 90 minutes away and has agreed to go with them to the appointments for support. Covid-19 hasn't helped with appointments being postponed. I'm trying to be supportive but I feel like my brother-in-law is just as resistant as my sister. I can't say he's in denial. He is a good caregiver. He works and my Dad stops in 3-4 times a week to have lunch with her or take her out. Any advise would be welcome. I feel like the clock is ticking and any  help she might have received is slipping away.
Marta
Posted: Tuesday, June 23, 2020 10:22 AM
Joined: 6/3/2013
Posts: 913


Walk a mile in his shoes before you judge.
dayn2nite2
Posted: Tuesday, June 23, 2020 11:33 AM
Joined: 6/20/2016
Posts: 2415


If you aren't the person living with her and taking care of her, why do you feel this way?

Unless you're prepared to file for guardianship of her and take over her care entirely (spending thousands and probably losing), how you feel about how he's handling this is your problem, not his.

If you were long distance and trying to have input into the frequency and type of appointments I was making for my LO, I would shut you out pretty quick and you'd maybe get an update every 6 months or so on her.

It's terminal.  There is no miracle drug.  Getting diagnosed will change nothing in his day-to-day life.


jfkoc
Posted: Tuesday, June 23, 2020 12:58 PM
Joined: 12/4/2011
Posts: 18953


Of course you are concerned about your sister. I would want to know if the diagnosis was made by the neurologist following proper current protocol. This would be significant lab work etc to rule out problems that can effect ones memory etc that can be treated. I don't know if you can find out about this. You can find information on line regarding diagnosis.

After ruling things out you will want to find out if it is Alzheimers disease or another dementia like vascular or Lewy Body.

None of the above dementia's have a cure but at some point your sister will undoubtedly need medication and the meds for each differ.

The imaging test will help with diagnosis but the cognitive skill will only tell you what part of the brain is compromised.

I have no medical education. My suggestion for you would be to do a lot of research and then carefully share what you find with your BIL and father. CAREFULLY.


Jo C.
Posted: Tuesday, June 23, 2020 1:47 PM
Joined: 12/9/2011
Posts: 11222


Hello cicipep; I can hear in your writing how concerned you are on your sister's behalf and that is understandable.  It must very difficult to be so far away and to feel so helpless to be able to do anything to help your dear sister.

Being so far away and not able to see and hear what is happening on a 24/7 day a week expericnce with your BIL as he cares for your sister, sometimes does not give us as clear a picture as to how things really are.  It is often much more difficult that we realize when at such a distance; therefore, it is best to not judge the situation as so much is not directly seen.

Your BIL sounds as though he is really  immersed in a very difficult situation. He has a wife with dementia which can be emotionally difficult for the spouse; she is resistant to medical appointments; her husband must work; he is in the midst of a very difficult time with the COVID pandemic and must work hard at keeping everyone safe. I also wonder what her behaviors are like and if that may be part of the ongoing problem.

I do know from experience, that many care settings did cancel appointments for anything but urgent or emergent type care issues; so those barriers have to be worked with too.  It's a lot on his plate.

In all probability, the most difficult aspect of this for your BIL is his wife's refusal to have any appts., and also from experience, I can say that appts. with specialists and testing can take several months to get; so that too plays into all the upheaval your BIL is dealing with including all the cooking, shopping, housework, caregiving, finances, etc. that he must do.  Behavioral changes in a loved one (LO) can often be over the top and this may be something that your BIL is also dealing with in regard to refusal of care.

Since there are so many changes in your sister; does she have anyone with her in the daytime while her husband works, or is she safe without that at this point in time?

Perhaps taking a different approach may be helpful.   Why not begin to provide much more emotional support to your BIL by all the family?  Let him know that you can see how difficult this has been for him and that you understand.  Let him know you are there for emotional support.  He then may begin to feel more open and able to share his situation and problem issues which will perhaps help family members to be able to be supportive in getting things settled in. 

It may also be helpful for the family to be provided with the information in the following excellent writing, "Understanding the Dementia Experience," by Jennifer Ghent-Fuller.  It is really informative and enlightening:

http://www.dementiacarestrategies.com/12_pt_Understanding_the_Dementia_Experience.pdf

Let us know how things are gong, we will be thinking of you.

J.


jfkoc
Posted: Tuesday, June 23, 2020 7:35 PM
Joined: 12/4/2011
Posts: 18953


Great  advice!
MrToad
Posted: Wednesday, July 1, 2020 1:53 PM
Joined: 7/13/2017
Posts: 444


Cicihep:

Perhaps the single best thing you can do for your sister and BIL is to put good information into his hands so that he can educate himself to be better prepared for the journey ahead.

I have been your BIL. I knew there was something amiss for my 58 year old DW, but she denied it vehemently. Our GP was no help; he was old school and apparently would not consider  YOAD. He was of the same attitude as the physician who presented a recent Alzheimer’s training course from Univ of Washington. She (incorrectly) said that YOAD is rare and always linked to the family’s genes. Five percent of cases is not rare, it’s the leading edge of the bell curve, and no, YOAD is not the same as the deterministically genetically linked Familial AD.

But at the time, I didn’t know any better.  

So I focused on things like Depression, PTSD—fixable conditions if we could just find the right Counselor. We went through half a dozen counselors, including a Marriage Counselor , only to have them all say that DW needed to be seen by a neurologist, not a psychologist. Like your BIL, I was still working, and the stress of owning my own company and worrying about my DW getting lost on the way to her gym did not make for a fully amicable homelife. As you suspect your BIL may be doing, I tried to swim as long as I could in de Egyptian River—Denial. I was scared witless and I didn’t know how to proceed, how to help the Love of My Life. Perhaps your BIL is in a similar fix?

I didn’t know about Alzheimer’s, let alone YOAD. If I had ever looked it up, I would have stopped at the “Younger Onset is Rare” part, and moved on. After regrettably too many years of DW’s resistance and my denial I finally got her to a Memory Clinic, and got the Alzheimer’s diagnosis. No, it didn’t mean we were on the road to recovery, but what it did do is get me to learn about the disease, and how to be a much better caregiver for my sweetheart.

I agree with JoC, Ghent-Fuller’s book is great. But both the Alzheimers Association and the federal government also have a lot of good free booklets. I know, the problem with a brochure from the Alzheimer’s Association is that it says where it is from pretty blatantly, and that may be offputting. So check out the free pubs from the feds at-- https://order.nia.nih.gov/view-all-alzhemer-pubs .  There’s about a dozen different ones, but I suggest “Understanding Memory Loss” as a starter, while the “Alzheimers Disease Fact Sheet”; “Caring for a Person with Alzheimers Disease”: and “Understanding Alzheimers Disease” are also valuable resources. These are reliable sources, with none of the “Donate Now” vibe one gets from the Association’s materials. Currently, they’re not shipping hard copies, but they are available for download.  Hope this can be of help to you, your sister and your BIL.


cicihep
Posted: Wednesday, July 1, 2020 4:18 PM
Joined: 6/16/2020
Posts: 7


I understand your statement; 

"It's terminal. There is no miracle drug. Getting diagnosed will change nothing in his day to day life." 

It's pretty much the bottom line. 

thanks


cicihep
Posted: Wednesday, July 1, 2020 4:20 PM
Joined: 6/16/2020
Posts: 7


thank you
cicihep
Posted: Wednesday, July 1, 2020 4:44 PM
Joined: 6/16/2020
Posts: 7


thank you for your kind reply. 

My father lives close by and stops by 2-3 times a week. He will bring lunch, take her with him to the store (pre-covid) and takes her to her other medical appointments. 

My brother and I have both make every attempt to support our BIL emotionally. That's why I found this message board to seek advice and not place any pressure on my BIL. We've never been down this road. I'm reading as much as I can and most of that information focuses on getting the diagnosis. I understand the diagnosis won't change the outcome for my sister, but it may be the link that helps my BIL open resources.  

appreciate the article too.  


Michael Ellenbogen
Posted: Wednesday, July 1, 2020 4:45 PM
Joined: 11/30/2011
Posts: 3456


If I was you I would not lose hope and try every thing you can.
cicihep
Posted: Wednesday, July 1, 2020 4:52 PM
Joined: 6/16/2020
Posts: 7


thank you. 

I really appreciate you sharing your personal experience. It helps. 


Iris L.
Posted: Wednesday, July 1, 2020 5:01 PM
Joined: 12/15/2011
Posts: 16607


The primary focus of a thorough diagnostic workup is to search for treatable causes of memory loss, of which there are many.  Also many common medications that older adults take can cause memory loss.  If it is determined that one of the dementias is the cause of memory loss, there are steps that can improve functioning and prolong the early stages.  This will allow for time to make serious decisions and to enjoy the family more.  Most people have a great fear of dementia, which can lead to depression.  Knowledge can help with the fear and with the depression.

Iris L.


cicihep
Posted: Saturday, July 4, 2020 12:41 PM
Joined: 6/16/2020
Posts: 7


Thanks Iris.