View unanswered posts | View active topics It is currently Sun Sep 21, 2014 4:14 am



Reply to topic  [ 12 posts ] 
 Hardest time of my life 
Author Message

Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Hardest time of my life
:cry:

My husband, Tom, had an unknown injury last week resulting in a deep tissue bruise on hs left hip. I know he didn't fall, I would have had to pick him up. Over the next 48 hours his confusion increased, mobility decreased and we ended up in the hospital for two days with orthostatic hypotension.

Drs decided to remove all meds and gradually reintroduce. Well, now he is even less mobile, hallucinations and delusions are completely out of control. I can't leave him for more than a few minutes. Seroquel has helped over the last two days. We have a teenage daughter, I can't stop everything, she'll be a high school senor nrxt year.
I hate this so much!!! We found a ALF 10 minutes from our house. I don't feel like there is another option and I feel like it's the best for him but I HATE HATE HATE this. I feel like my heart has been ripped from my chest. We move him tomorrow :cry:

So much guilt, so much sorrow.....


Wed Jul 14, 2010 11:49 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hardest time of my life
Perhaps you can reintroduce meds and get him back to a good point such that you can bring him back home in the future??

Was moving to the hospital's psych wing an option? Was going to a skilled nursing facility (where Medicare would pick up the tab if your husband is on Medicare and stayed the required amount of time at the hospital) an option?


Thu Jul 15, 2010 2:34 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Hardest time of my life
Sandilee, My heart goes out to you. My husband is having more and more bad days where he's so confused and and having more hallucinations, I have to stick to him like a shadow because I don't know what he'll do. His Dr. said when he get like this I can increase his gabapentin at bedtime. It does allow me to get a nights sleep but I wonder what will the future hold. My children are older but there are many times I want to join them in some activity and attend any thing that's going on with our grandchildren. I do my best to take care of his needs, but he is more and more resistant so it's a challenge.

After reading Robin's questions/suggestion, maybe your husband's placement won't need to be permanent. You'll never be able to go back to your daughter's senior year, a very special time in her life, whatever you decide will be the best for the entire family.

Take care, Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Jul 15, 2010 7:07 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Hardest time of my life
Sandilee,

How did it go? Is Tom settling in and getting the care he needs? I can't imagine what you must be dealing with. My heart goes out to you.

I'm about at that stage with my mother and I'm terrified of how I will handle it. In this city, to get into a really good facility, you have to get your name on waiting lists. When something comes up you pretty much have to take it, ready or not. I have always expected to have to do something like this for my Mom. But I can't imagine doing it for a husband (I know a lot of people here have), and one young enough to have a teenager. You have a much bigger challenge than I have. It kind of puts things in perspective.

I respect you for what you have already done and for making this heart-breaking decision. I wish you and your daughter the best. I hope she has a wonderful senior year!

Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Tue Jul 27, 2010 3:03 am
Profile

Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Hardest time of my life
Thank you Kate -
You are kind but my challenges are no harder than anyone elses just different.
I am happy to say that he is settling in nicely. It has been extremely difficult. The first week was terrible, constantly doubting, second guessing, worrying about him, and my daughter... the list goes on.
I do still worry about all of the above. However, in the last several days, I have seen a level of acceptance in my husband.
His disease has been a strange ride, we can literally see the Lewy side of his brain fighting the healthy side. Even his neurologist has said that. SO while he can no longer use a phone, remote control, and is beginning to lose understanding of the bathroom and toilet....Yesterday when I started to cry, he said "No, now none of that, I understand the care and the need and I agree. We will be ok."

I am also blessed to have a very mature and compassionate teenage daughter, who is very supportive and in agreement with this decision.

I do go to see him daily. I also lay down with him every day. I joke that I am probably the only visitor in the history of this ALF to come get into bed with a resident LOL.

I do feel that there was a divine intervention in all of this. I knew it was coming, but I never imagined this soon! But when I took him to the ER on the 6th (our anniversary 19 years) I just somehow knew that he wouldn't be able to be home. Things just fell into place... We visited several ALFs in the area on the 12th, our favorite had one opening for a man(very rare for it to have an opening). I later learned that the previous resident had passed away a week earlier on the 6th. This place had been recommended by several friends and medical co-workers. It is small only 14 residents in the dementia unit with 2 aides and 1 LPN on each shift. So far so good....

Things are not perfect. I still miss him terribly. But for him I think our active lifestyle with a teenager was too unpredictable. His Physical Therapist just said today, "He seems to be thriving in this scheduled environment." He misses us and home but we take him out and will start bringing him home for visits soon. He's only 10 minutes from our home.

So while it has been the worst time in my life, I have learned a lot about the courage, strength and selflessnes of the man I love. He has an amazing coping skill and strength. I watch him be strong and who am I too whine and feel sorry for myself????

Sandilee


Wed Jul 28, 2010 10:57 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: Hardest time of my life
Sandilee - sounds like you are all learning to adjust to a different life. Although this has to be really tough for a teenager, to see and care for a parent with a truly awful disease, she is likely to be a much more mature and compasionate young woman than many her age.
I am so sorry for what you all are going through, but it sounds like life is moving along and everyone is doing the best they can under difficult circumstances.
Take care of yourself while you are caring for an ill husband and a teenager. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Jul 29, 2010 8:52 am
Profile

Joined: Fri Jan 23, 2009 4:11 pm
Posts: 31
Location: N Calif
Post Re: Hardest time of my life
Sandilee, you are very right--the very most difficult decision !!! after 3 months and it is still hard to write about--
during the search for possible places it seemed impossible to find a place that could care for him properly---as protected as I thought I kept him. My stress level during that time was almost unbearable. I changed my mind each week, telling myself I really could continue to take care of him with the help of a live in helper. I spoke with several wives from caregiver support groups asking their advise. I made excuses for his more frequent bouts of anger, but made sure my retreat route was clear.
We tried to reassure him when the hallucinations made him anxious. He did require help with all activities of daily living, but at times thought that we were his captors, so would throw things at us and try to escape. Still I felt very guilty that I couldn't
keep him safe and comfortable any longer. I felt even more guilty when I realized within 3 weeks that his new home was definitely wrong for him. Moving him to another place that gives good care was much easier. Still, it is very difficult to totally give up what has been my job for 49 years!! Yes, I did stay the first 2 nights in his bed(both places), and now still visit almost everyday for at least a couple hours, Sometimes feed him dinner or lunch . I no longer feel guilt at having help in his care, just sadness that the life of this wonderful gentle nonconfrontational man must endure the indignities of this terrible disease. And it is lonely at home alone! Our teenage Grandchildren will visit him this week. I hope he will understand who they are. I know he would be sooo proud of them.

_________________
Di


Tue Aug 03, 2010 6:29 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3366
Location: Vermont
Post Re: Hardest time of my life
I bet the visit from his grandchildren will perk him up some. If you think he might not know who they are, have you thought of showing him photos of them and talking about them before they get there? That might trigger some memories. Just a thought.
All the best wishes, during such a hard time. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Aug 03, 2010 11:45 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Hardest time of my life
Sandilee,
I am just coming back on board here with a long time away and I was reading through and I just wanted you to know that I understand it being the hardest time in your life and yes everything does happen for a reason, I too had a teenanger at home when my husband was alive and it was most difficult to keep up with it all, I am glad life is starting to settle for you and I wish you well!

_________________
Irene Selak


Tue Aug 03, 2010 1:48 pm
Profile WWW

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Hardest time of my life
I envy you for your husband and marriage, Sandilee. I've always been single and marriage has always amazed me. That incredible strong bond between two people sounds, from what you've said and the way you've said it, like it will always be there. No matter what happens. Your husband sounds like a very caring man who wants you to survive this - and survive it well. I know that you two (and your daughter) will get through this - together.
God bless you and your husband for the love you share and bless your daughter for her strength. I hope, though, that your daughter does have times when she lets herself grieve. Sometimes a teenager will believe that she has to be strong for the sake of her mother, and it takes her years to let herself grieve. I know this because that is exactly what I did when my young (48) father passed. Everyone admired my strength, but my grief came out in ways I'd prefer not to remember. Keep in mind that she needs a few explosions and tears of her own in order to come out on the other side of this intact.
Take care of yourself. Take care of your family.
Best wishes,
Kate

_________________
Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Thu Aug 05, 2010 11:18 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hardest time of my life
Sandilee,
Glad to hear that things are settling down and your husband may actually be thriving in his new environment. It's certainly a gift.
Robin


Thu Aug 05, 2010 11:40 pm
Profile

Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post Re: Hardest time of my life
Thanks everyone for your kind words and support. We have good days and bad... but I do believe this is the right thing for us.

@ Kate
Thank you for your words of advice from your own experience. I really can use all the help I can get. She and I both see counselors. She has days that she is in denial and then other days that she, as she says, "has a melt down". Luckily,she is very open to talk with me. Unfortunately, I know she also wants to protect me and take care of me. It's sad, but she can't go alone because he constantly obsesses about where I am, which puts her in a hard position and hurts her feelings.

@ Lewyspouse
" just sadness that the life of this wonderful gentle nonconfrontational man must endure the indignities of this terrible disease"
I could not agree more!!!! It breaks my heart to sit with this man, who was at one point a highly respected educator, and watch him become frustrated when he can't complete a thought and tear up and say " I hate being stupid!" This is a terribly cruel disease

I continue to visit daily. Our daughter and I are planning a 6 day trip out of state next week. Please say a prayer that he adjusts well. His biggest problem is his dependence upon me. He looks to me for all the answers and I am still his "guide to reality" as he says.

It's a daily sometimes hourly process. I've instituted a call schedule so he can only call me 3 times each day, in addition to my visits.

Again thanks to everyone... I really appreciate your thoughts, kind words and advice :-)

Sandilee


Fri Aug 06, 2010 11:51 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 12 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr