Author Topic: Update: Move, Health, Challenges  (Read 832 times)

Carolina

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Update: Move, Health, Challenges
« on: April 28, 2019, 08:37:39 AM »
Dearest Sjogren's Angels,

So, six weeks into our move to our Senior Living Community, and I'm very glad we made the move, although this has been very challenging.

The Good:

I love meeting new people here, and have joined many activities. I love being able to leave our apartment and go down to breakfast (just 'continental') where there always a few people to say hello to, and the huge windows look out on the lake.  I can go to exercise and swim, any time I want, which is very nice, as well.

Our apartment is fine, and we're almost settled in.

The Bad:  My mobility is still a challenge because I walk with braces and a walker, and cannot stand for more than two or three minutes.  The hardest part is that I have a great deal of pain, which is primarily from severe arthritis.  I've run out of options for medication and surgery is 'off the table' due to my profound neuropathy.

I can't do anything physically demanding, which is so frustrating!

I saw my neurologist  couple of weeks ago because I have developed a tremor in my left hand.  He says that it is not related to the degeneration in my neck, which I suspected.  He thought it might be from the very large dose of Gabapentin I take to control the pain of Small Fiber Neuropathy.  So I have cut back the dose to see if that helps. 

He also tested my ferritin levels for the first time since 2012.   In 2012 the level was 20, in a range of 11-204.  My level NOW is 436!  I have treated idiopathic anemia since 2007 with Iron tablets twice a day, but of course I immediately discontinued the iron supplement.  He will test me again in three months.  This was a complete surprise.  I wonder if having IVIG since 2013 somehow restored my natural iron supply?

The Ugly:  And there is an ugly development. My husband is CLEARLY in the early stage of dementia.

Our sons have been telling me for over two years that my husband is 'losing it'.  Now it is very clear to me.

He is disorganized, often confused but lashing out in anger and accusations, he sleeps 10 hours at night and then falls asleep constantly in his recliner during the day.

He hates our move and complains about the food (which is fine), tells people at meals that he doesn't like it here and that the food is terrible!  He has lost some of his ability to control his feelings.

We have sold our house and meetings with the realtors are a nightmare as my husband constantly confuses everything but has to 'be in charge'.

He calls people in the family and asks about things that were settled long ago, but he doesn't remember.

Our move over whelmed him.  He insisted on moving enormous amounts of 'stuff' because he is very attached to his possessions.  There are still piles of clothing that he has no where to store, and he already has 3/4 of our closet space and two large chests!   He brought at LEAST 30 pairs of shoes, and several suits still in dry cleaner bags that we have moved THREE times since he last wore suits.

I cannot arrange the things in the apartment that are still not finished, and he just sits and does nothing.  If I touch anything of his, he complains.

He opens packages that are delivered and puts things that I have ordered AWAY, so I don't know where they are!

Wednesday he opened the box of my IVIG supplies, put the IVIG bottles in the refrigerator (thank god) and threw away the box with all the additional supplies that my nurse needs! 

When I asked him where the additional supplies were first he said "there weren't any", and then he said "I put them in the refrigerator" (they weren't there).

I have joined a marvelous on-line support forum sponsored by the Alzheimer's Association.  It is saving my sanity.  I have support and understanding there (just like HERE) and at the suggestion of those who post there I have found TWO books to read that are a great help, and I have privately contacted my husband's Primary Care doctor with some information about my husband's behavior.

My husband has an appointment in early June.  PCP's can't really do much, but I wanted her to know.

My husband still drives 'ok', and cares for himself well.  But the future for him and for me looks very scary, I have to say.

FORTUNATELY everyone here understands my plight.  In fact several of the women here have husbands in early stages of dementia as well!

And part of our community includes an Assisted Living Facility and a Memory Care Unit.

It's just that I am far too disabled to care for my husband once he declines to the level the he needs physical care. And that day will come.  My husband has dementia in his family, and the future will be ugly, I'm afraid to say.

Fortunately we have Long Term Care Insurance.

My younger son (a doctor) said that I didn't make this move a day too soon.

So life goes on, and it is indeed always something!

Love, Elaine
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Skylar

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Re: Update: Move, Health, Challenges
« Reply #1 on: April 28, 2019, 07:21:55 PM »
Elaine, I'm so sorry about your husband. This has got to be so difficult for you to live with.

You are lucky to have moved into a facility where your husband can move to the Memory Care Unit when you can no longer handle it. But it looks like you have your hands full right now having to watch him and watch for deliveries of packages.

That move must have been very hard on him making his dementia worse. He must be swirling in confusion being in a new location plus the stress of selling your home and moving.

As for his piles of stuff - can you slowly eliminate a suit or two, maybe one a week so he doesn't notice the change but you are slowly decluttering. I might help make you feel better without disturbing him? Don't tell him, just do it subtly - do you think he would know in his confusion?

Bucky

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Re: Update: Move, Health, Challenges
« Reply #2 on: April 28, 2019, 09:28:14 PM »
{{Elaine}} - sending you a long-distance hug, I think you can use one!

I'm glad that there is a "good" section post in your thread.  Just from reading your posts all these years, you seem like a people person, and I'm sure you do enjoy meeting new people.

I know you've done swimming for a while, it's nice that there is a pool on-site there.

Hopefully, if you back off some of the meds/supplements you are taking that it will help improve some of your medical conditions.

I'm sorry that things are so challenging with your husband.  Would it be possible for your son to keep some of dad's things at his place for the time being (like the suits and some of the shoes)?

It's hard when you see a loved one going through challenges with their health and there is nothing you can do to "fix it".

Elaine, as you know, in order for us to take care of others, we also have to take care of ourselves. 

"So life goes on, and it is indeed always something!" . . . . isn't that the truth!!

Bucky
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irish

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Re: Update: Move, Health, Challenges
« Reply #3 on: April 28, 2019, 09:43:01 PM »
Im sending hugs also. You have so much on your plate and are so lucky to have gotten this move over with and the house sold. These two things truly do cause great decline in people who are sliding into dementia. I would not worry too much about the items that don't have a place yet as the day will come when your hubby will end up in memory care I would think. It isn't worth causing him a lot of upset to organize things.

Also, it sure seems to me that chronic illness and our age progression does not very much encourage organization. Consider the move, the fatigue and our forgetfulness plus added health issues and then our spouses health. I know those years were much harder on me than I realized. The numbness that settles in to allow us to endure the stress takes it toll.

On a very cheerful not I am so glad that you have support with the new friends and activities plus having meals. Your son is right....It wasn't a day too soon.. When the chance came to move I noticed that you took it and ran with it. A smart girl indeed. Just a little info for you. I cannot believe it but my hubby passes away 5 years ago April 16. Time does indeed march on. Good luck and take care. I will be keeping you in my prayers. Irish

ohiolady

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Re: Update: Move, Health, Challenges
« Reply #4 on: April 28, 2019, 09:49:06 PM »
Elaine,I am so sorry to hear about your husband. My mother has Alzheimer?s and is a terrible terrible disease. I sure do pray that things work out for you. It is a blessing that there is a memory care unit at your facility. Please try not to feel guilty when it?s time to move him to the facility. And your condition you can only do so much. Sending you a very big hug!

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Jenny

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Re: Update: Move, Health, Challenges
« Reply #5 on: April 29, 2019, 04:09:12 AM »
Elaine, first of all I?m so sorry for all your trials and tribulations. Your husband sounds just like my mother in law when we first moved her into assisted living. She hated it and constantly complained about the food. Her dementia was getting worse. I took her to a memory care doctor who did a brain scan. It showed Alzheimer?s. She was put on a medication to slow down the progression. Eventually she ended up loving it there. Hopefully your husband will as well. Unfortunately my mother in law ended up passing away from cancer about a year and a half later.
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Carebear

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Re: Update: Move, Health, Challenges
« Reply #6 on: April 29, 2019, 05:03:30 PM »
Dear Elaine,

Your move was indeed timed perfectly.   You now get all the exercise, friendship, support and tasty meals you deserve.  That all sounds so great.

The change with your husband's health is your next unfortunate challenge.   But you are lucky to have a son nearby and you found an online support group that has already been able to help you feel that you are not alone.   And having met new friends who know exactly what you are experiencing is going to be a very good thing.

You've always been here, supporting others.   It's nice to see that you are now on the receiving end.

Although I am very sorry that you find yourself in this very sad and also frustrating situation.
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SjoDry

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Re: Update: Move, Health, Challenges
« Reply #7 on: April 30, 2019, 05:56:29 AM »
Dear Elaine,

Congratulations on making the move. I just went through it with my mother so I know how difficult it is..  I am sorry about your husband and am dealing with my own version of dementia with my 84 y/o mom's Alzheimer's.

I signed her up for an Alzheimer's study at the Univ. of Pittsburgh. I also got her started on medical marijuana (after a great deal of research). MM is supposed to slow the progression of neurodegenerative diseases. It has helped her anxiety and snarly attitude about everything, greatly helped her chronic pain and helps her sleep.

I also found a lovely continuous care community where she can change levels of care as needed. I was fortunate in that she was very excited about moving to this senior living community and still loves it, so I am not dealing with a bad attitude over the move.

Here is yet another forum for Alzheimer's if you are interested. I get a lot of great info from there. Also, do some reading of Teepa Snow's materials. It was very helpful to me in learning how to manage my expectations and learning how to ignore some of her behaviors (albeit with a bit of enamel off of my teeth from time to time).   https://www.alzconnected.org/  Also, I subscribe to a blog called: MakeDementiaYourBitch. The blog has some interesting posts from time to time.

While I am juggling all of this, I have discovered that I have serious spine issues (including a fracture) and am waiting to see if I will be diagnosed with Parkinson's on Friday. I am trying to push down the creeping fears of how I will manage mom if I am dealing with Parkinson's. One thing at a time I guess! It is what it is...and sometimes that is not so pleasant.

Sounds like you found a lovely community. The new friends and support will lift your spirits, I'm sure.

Take care.
SjoDry
« Last Edit: April 30, 2019, 06:02:29 AM by SjoDry »
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araminta

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Re: Update: Move, Health, Challenges
« Reply #8 on: April 30, 2019, 07:26:48 AM »
Hi Elaine, well done for making the move, and I'm glad you like the place, I must say it sounds great.

My mother has dementia, so I do have some understanding of how difficult this is to deal with.   She was diagnosed around five years ago, and her behaviour became quite difficult at times.   She had a live-in carer for a couple of years, but had a tendency to get up and wander around the house in the middle of the night - one night she did this and had a bad fall.   She has been in a nursing home and bed-bound ever since.

There is all sorts of good advice online, things like trying not to argue too much with the person, consistent routines, not too many distractions.   It's very important that you look after yourself and your own health (mental as well as physical), if you find you can't cope, you need to say so, it's nothing to be ashamed of, even people in perfect health find this hard to deal with.

I hope that your husband will settle down after a few months, my mother is much calmer now than she was when she first entered the nursing home.   The new routines start to replace the old ones.

Sending you a big hug, and hope you get all the help and support you need.
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SjoGirl

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Re: Update: Move, Health, Challenges
« Reply #9 on: May 01, 2019, 04:13:32 PM »
Oh, Elaine, there is a saying that we have to take the bitter with the better, you do seem to always have quite a dose of the bitter.

You've already heard may good comments from others. I will just echo that moves do wreak havoc on people who have memory issues. I do also wonder if your husband might be experiencing Sundowners, being more agitated and maybe even angry in the evening. I hope your appt with the doc is in early June too much time with this will be very draining for you.

I hope you can continue to enjoy the pool and meeting new people, may those bring you some joy.
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Carolina

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Re: Update: Move, Health, Challenges
« Reply #10 on: May 02, 2019, 04:56:17 AM »
Dearest SjoGirl, Araminta, SjoDry, Carebear, Jenny, Ohiolady, Irish, Bucky, Skylar,

Thank you for your kind words, and suggestions.  I'm trying to take this a day at a time, and to care for myself, as well.

My chronic inflammation is getting me down. It is the reason I have chronic pain.

I can experience improvement in my inflammation  if I take additional prednisone, but that of course isn't ideal! 

And today I 'decided again' that my weight isn't helping my inflammation and pain.

One day at a time I need to make better food choices.  Food is the highpoint of the day, here in our Community. 

Well, face it, food has always been the 'high point' of my life.  Sigh.

Making the best choice, every time I have a choice, that is my goal.

Knowing that you are all here, sharing my experiences, and giving me support brings tears to my eyes.

Love, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

Deb 27

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Re: Update: Move, Health, Challenges
« Reply #11 on: May 04, 2019, 09:34:53 AM »
It really sounds like that was a great move for you and your husband. The facilities sound beautiful with many resources for the residents. It's good to hear you are enjoying it. You always make the best of everything Elaine and have such a positive attitude.

I am sorry the move was so hard on your husband. Moves are extremely stressful ! I know, I've done it a lot. Perhaps with some adjustment time, things will get better for your husband.

 Dr. Mark Hyman, the chair from Cleveland Clinic Functional Medicine,  has a lot of videos and books on health and one topic is dementia. He has some ideas on dementia that have helped a lot of patients.  I included a link below. If a loved one of mine was having memory issues, I'd check these things out. They offer some hope, at least.  I trust his advice as he's from Cleveland Clinic, one of the best Medical facilities in the US, as I am sure you know.

I wish you and your husband the very best in your new residence!

https://www.youtube.com/watch?v=ZPHnrdt9Mnw



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