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Internal Administrator
Posted: Tuesday, January 17, 2012 3:44 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: DonM

I don't really like to keep starting new threads but this is important. I will be posting it at the end of the others as well.
I will have to be brief as I am exhausted and need to get to bed. As many of you know my DW has gotten weaker and weaker over the last months. She has constant pain (4 back surgeries, is very inactive, diabetic, overweight, and AD just on Aricept.
Saturday evening I had to call my daughter for help getting her up and to the bathroom. Later that evening I could not get her out of a chair to go to the bathroom and then to bed. I sensed that there was something else wrong and called 911 for transport to the ER.
Not only was she so weak that she could not stand on her own but when the blood work was done it was discovered that her kidneys were only working at 10%. Needless to say they admitted her to the hospital.
It is now Sunday evening and I am home and ready to crash. I have only slept 2 hours in the last 48. The treatment plan at the moment is to address the kidney problem (The kidney function was fine one week ago when she was in the ER for general weakness.), assess the weakness and find a rehab facility for PT and OT, have further evaluation by her neurologist, and address a rather large blister/sore that has developed on her left heal.
Needless to say I am very worried and stressed but glad that I can get a nights sleep. I appreciate all of your concern and help here and ask for your prayer and good wishes.
I will post more as we get more information in the days ahead. For now I need to get some sleep. Thanks again for your care and concern.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Cathy J. M.

Oh my! Don, I know you're so worried. I'm sending you love and prayers.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

Thank you all very much!!!! I can't begin to tell you how important you all are to me and this community. I just came home from the hospital for a quick lunch and am glad to report that her kidneys are a "bit" better and the Dr. said the progress was a good sign.
They are starting PT -OT and it is both slow and painful.
God Bless you all and thanks again for your prayers. When I pray I have now included you all in the "Blessings for good friends" section. I know you all have your own set of challenges and concerns and I ask the Lord to give you strength as well.
Off to the Hospital again.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Karren

God bless you Don, He will bring you through this. Wish I had something very profound right now, all I can say is, we are here for you.. Frowner
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: jona

Dear Don,

You and your DW will be in my thoughts and prayers.

All my best,

Jona
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: jellybeans

It's hard to know what the right choice is. My Grandma, the second time she broke her hip, made no progress in rehab. But, I brought her home, got her some OMM for her pain so we could discontinue the pain meds that were making her crazy and she made tons of progress at home and walked. In hindsight I wish I would have just had her rehab at home, but this may not be the way to go for other people.

Watching the aides care for her might teach you how to care for her at home, depending on your physical health. I learned so much watching the aides at the rehab(could have learned just as much watching aides at home too). If not for the learning, I wouldn't have been able to bring my Grandma home when she wasn't walking.
Will they let you stay with her at rehab? I literally lived in the rehab while my Grandma was there.
I wish you well with your decision and hope that your wife improves.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

Hi,
I need some advice and feedback please.
Here is an update on my DW's situation. She has been in the Hospital since Saturday evening. I posted the details on the first post of this discussion. As of this evening, Wednesday her kidneys are some better, she is still somewhat anemic, the large blister on her heal is in danger of breaking (She keeps taking the protective boot off and throwing it on the floor) and she is still very weak. She did take about 5 steps today but that was all she could do and there were two PT aids on each side of her walker. She is not eating. About two bites of dinner and a small bite of the roll was all she would do.
Today she said she was at a Church meeting and wondered why all of the teachers (nurses) were going in and out. She then got argumentative and combative with me and accused me of having an affair with one of the "teachers" and with someone 25 years ago. I finally had to leave for a while and come back later. When I came back she was as sweet as could be but was still at the Church meeting.
The Dr. said today that the kidneys were a bit better but not where they should be and that she was still a bit anemic. She also said if she did not eat and drink plenty of fluids she would be right back where we started. She asked me if I thought she had the drive and fight to do the PT. I said I was not sure she did. (She has always hated exercise and anything that "hurt her body.") The Dr. then said that if she did not work hard at the PT and eat and drink better I should prepare myself for the fact that she may never come home again. Needless to say I am devastated and very very sad. I am afraid she may be right.
My DW may be transfered to the rehab facility tomorrow and all she wants is to come home. She was so mad at me this evening for not taking her home that I had to leave so the nurses could calm her down. I need your feedback.
AM I DOING THE RIGHT THING? ARE THERE OTHER OPTIONS THAT YOU ALL KNOW ABOUT THAT I HAVE NOT EXPLORED?
I am feeling like I have failed her and am deserting her in her time of greatest need, and at the same time I know that I can not care for her at home. Should I hire 24 hour care at home? Is that a real option with her in the medical condition she is in? So many questions, so little time to decide, and so much worry.
Any and all feedback will be welcomed. It is now 11:00 PM and I am exhausted and need to try to sleep. Thank you all for your care, concern and prayers.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Cathy J. M.

I can see why this is so agonizing. Being in a hospital or rehab facility away from home can trigger delirium in older patients (even if they don't have Alzheimer's) and it sounds as if this might be happening with your wife.

Get the hospital to call in a geriatric psychiatrist to consult while she's there -- for an opinion on rehab vs. home, and on her meds. The neurologist she has an appt. with soon knows about her current crisis, right? If not, call there too.

Sometimes it helps to stay overnight in the hospital with the patient, but not always.

What troubles me is that everything was still pretty chaotic at home -- she wasn't eating much there, or exercising -- so it may be that there's not much to lose by trying the rehab facility to see if she gains there.

A rehab center won't keep her if she doesn't make progress -- at which point you'll have to decide NH vs. home. My guess is that you've had your hands full and haven't had time to research the best nursing homes in your area for your wife's conditions. Can you afford 24/7 care for a long time?

I'm so sorry you're having to cope with such a crisis. Be sure to talk with the hospital or rehab center social worker about your concerns, and talk with the hospital chaplain too if that might help.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: A.ALLEN

DON,the first thing that came to mind when reading your last post is " YOU are exhausted" yourself,and perhaps what is best is first what is BEST NOW FOR YOU AS WELL? I often see this in caring for our loved ones,physically and mentally at the "END of their ropes" as we say!! JUST hearing what you are going thru at HOME,IS it really possible for you to continue as it was? I agree,get a HOSPICE expert to evaluate her,and with her DR's they will be truthful what is best for you BOTH!!! Seriously-her anger and frustrations toward you are normal,this is so common! IF you were to put her in a facility for memory care,she would adjust alot faster than YOU!! YOU can not let the GUILT set in,what you do next is best for YOU BOTH!! YOU will continue to love and care for her,just making it alot easier on your health,mentally and physically! I can not tell you how many caregivers I've dealt with, go down hill faster, trying to keep loved ones in their homes! YOU want to remain healthy to spend the time you have----right??? BLESSINGS and HUGS to you DON_keep us posted. ALSO have the HOME she is in mix up those yummy ENSURE malts or smoothies for her-they will give her the nourishment she is not eating! SO many ways to make it tasty-Has she tried these at all??
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Starling

Don, call hospice. The doctor at the hospital can sign off on it since he has told you what the situation is.

You are trying to make decisions on your own without the information you need to make them. The people from hospice have the answers. Your wife might be able to go home, or she might need to stay at the hospice house instead of the hospital (for a little while or for good). They will know.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: JAB

Don, have you discussed what your options might be with the hospital's social worker? I'd talk to him/her, and to your local Alz Assoc chapter. There are companies that provide in-home care services, and you may also be eligible for some financial support to help pay for it. You need to know what your options are before you can make a decision...
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Cathy J. M.

A friend whose wife is paralyzed gets along OK with two CNAs -- one who helps her get out of bed, bathed and dressed and fed in the morning -- plus one who helps her with supper and bedtime in the evening. So the husband has her by himself for a few hours midday -- though often that time is spent doing PT and OT.

I mention this because you might be able to get by with this if you opt to keep her at home.

That's not a plug for bringing her home rather than sending her to rehab -- I think you need more info before making that decision. (You can always bring her home from rehab, but if you bring her straight home from the hospital it might be hard to get her from home to rehab -- not sure.)
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Iris L.

Don, There is a booklet called "Hard Choices for Loving People" that can be downloaded from the internet to help you make decisions. Many members have gotten help from this booklet. Here is a link:
http://www.hardchoices.com/

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Mimi S.

Hi Don, You've gotten lots of good advice above. You have to decide what fits.
Sometimes paying for GOOD care at home is as expensive as in rehab or a nursing home.

You also have to think about yourself. Take care of yourself first, so you can be there for her.
Her behavior, accusations, unfortunately are all too typical.

Here are two books that may help. Jolene Brackey's, 'Creating Moments of Joy." and anything by Naomi Feil. You can also google her.

Fast lesson. Meet the patient where they are. Prepare yourself, try to blot out your hurt. Look her eye to eye at her level. Same tone of voice. You say I have been cheating on you. Your next response depends on where she goes. You have to meet her where she is and recognize her fear that she's losing you. Denials usually only inflame her. Often, once her fear has been acknowledged, you can move on to other things.

Good luck.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

It is now late Thursday evening and I am once again home. My last post was written late last evening. After I came home from the Hospital last night my DW was even more agitated and did not sleep all night. She removed her IV twice and would not let them put it back in.
Today when I spoke to the Dr. she was very concerned as my DW's kidneys, having improved some with hydration, would surely deteriorate if she did not let them put the IV back in. She is presently not eating or drinking much at all. I/we have tried everything, including violating her diabetes diet just to get her to eat but she refuses.
She was seen by a psych consult Dr. and put on Seroquel to try to calm her down. Last evening they gave her haldol but that did not do much.

A few minutes ago the nurses caring for her asked me to leave as she was so agitated. I will be calling the hospital in a few minutes to check on her again. She was very disorientated and angry at me that we were not going home. I am not sure she understands that she is in the hospital. She was in a cemetery for most of the day and crying for her father who died in 1971. She was experiencing it as a recent event and at one time blamed me for killing him and both of my parents.

The Dr. said if she will not eat and drink and will not allow the IV there may not be much more we are able to do for her. That is devastating news and I am having a difficult time processing all of it. I feel like there must be something else we can do. She has also become incontinent both ways and seems to have no awareness of it. At first it was just the urination (at home) now she has a catheter in at the hospital and has just started the other. I am so very worried that she is getting into a situation where there will be nothing that we can do. I suggested a NG tube but the Dr. said if she is pulling the IV the NG tube would only last about 10 minutes.
I know you may not have much to suggest but I just needed to share. I am going to try to get some sleep before going back to the hospital. Thanks again for all your care, prayer, and suggestions. I appreciate it more than you know.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: JAB

Many drugs are contraindicated for patients who have kidney problems, so I imagine the doctors don't have too many to choose from for Don's wife.

Don, I am so sorry. I cannot begin to imagine how you're feeling. Thank you for taking the time to let us know what is going on. You and your dear wife are in my thoughts and prayers.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Cathy J. M.

Don, this gets more shocking every day -- I'm so sorry. Aside from urging them to try a different quick-acting shot than Haldol -- Zyprexa maybe -- I don't have any suggestions. It sounds as if the doctors and hospital are doing all they can.

I know you're not ready to lose her -- I don't think we ever get to that point. So all I can say is that I'll be thinking of both of you and sending love.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Iris L.

Don, is there a geriatric psychiatrist who can consult on your wife's case? They are experienced in calming very agitated Alzheimer's patients. Most AD patients will be more disoriented in a hospital setting, especially when catheters, IVs, strangers and blood drawing are involved.

Will she drink Ensure or Glucerna meal replacement liquid food?

Try talking with the hospital social worker about your options like JAB suggested. You still might be able to take care of her at home with in-home caregivers if that can be arranged. Also talk with the Alzheimer's Association social workers. They may give you more resources.

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Rkg

Don, I am so sorry that all this is going on. I know it's hard to watch our LO's fail. And very hard when the Dr's tell us there is nothing more that can be done. It's not that they are giving up, they just don't know what to do at a certain point. This dammmmmm disease just baffles everyone. I am sure it's scary when the hallucination start. But please remember she can't help it, it's the disease. She is not angry "at" you. It's the disease that makes her say those things. I pray your DW finds peace in her journey and you find comfort in loving her and caring for her along the way. Hopefully something they are trying to work to get her on the road to her AD normal, if that is what is to be. My thoughts and prayers for both of you.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: NightOwl

You need someone with expertise in what medication will calm her enough so that they can give her the care she needs. Probably a geriatric psychiatrist. Given the seriousness of the kidney failure and the immediate need for food and hydration I am surprised they have not tried multiple methods of sedating her so that they can treat her. The sooner she is stabilized, the sooner you can get her out of the hospital environment that is clearly detrimental to her.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

Good News - Bad News update:
When I returned to the Hospital this morning I found my DW in her bed with large (boxing glove) mitts on her hands so she would not pull out the IV. She was even more confused and agitated but at least was getting the fluids that she needed. She thought she was in a different place and I could not quite figure it out. I will try to make a very long stressful day into a shorter version.
The Dr. said , medically, she was or would be tomorrow ready to be released from the hospital. Her Kidneys and blood were, while not perfect, enough better that she could be released. That is good news!!! The Dr., social worker, and Psychiatrist all said she could not go home in this mental state. (Confused, delusional, combative with me and sometimes with the nurses.) They asked for a county mental health assessment for an involuntary hold in a psychological unit for further evaluation and treatment. That will take place tomorrow (Saturday) IF they accept that, she will go there (any one of three places) for evaluation etc., for 72 hours or 14 days. The Dr. said I really have no other choice at this point as no other facility will take her since she is in restraints and I can not take her home as it would not be safe for her or me. None of this is good news!!!! Here is the really bad part. After the 72 hours or 14 days, we have no idea which it will be, they will call me and say come and get her and take her home. They will not do any transfer or placement from there. I am not sure what I will do then.
I may have to find an AD facility that will take her but can I do that if she does not want to go. She said today, "I just want to go home now!!!! Please pay the bill and get me out of this car and into my car so we can go home." I am certain she would not willingly go anywhere but home. What options do I have? I would love to have her home but I would have to have 24hour care at this point. Not only is she very weak but incontinent both ways.
I hope to talk to the social worker and the Dr. again tomorrow to see...... She is, as I have said, still very weak, not eating or drinking much at all, and very confused and delusional. (Her Mother, who died in 1986, was coming to visit all day and she said I had to keep her away. She did not have a good relationship with her.)
I have no idea what will happen tomorrow but ask for your prayers. It is now 11:00 PM and I am going to try to get some sleep.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Cathy J. M.

Is there any alternative to the three facilities the county mental health evaluation would send her? If you have her POA for health, can you sign her in yourself, to another facility that would keep her till her medications are stabilized? Marge mentions Highline Geriatric Psych.

If the hospital social worker can't help you find a good placement (after she's stabilized and no longer combative), it might be time to call in a geriatric care manager. This would speed up finding a good place and doing the applications. I'd certainly take up Marge's offer to help you sort through places, too.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: martha r

Don,
I am so sorry for you.It sounds like my experience with my husband of 51 yrs. He had all the prblems of your wife and then some. Sooner or later you have to make a decision of what is best for her, and you. You might be surprised that her mental state would improve if you can get her home to familiar surroundings. His did. If you can afford someone to help you on a 24/h basis, that is the best option. I had my sons and daughter to help me out. Kidney failure is only one of the complications of diabetes and can contribute to the mental state. My DH lived for almost a year like that and succumbed to another major stroke. I am remarried now and facing vascular dementia with my present spouse. Guess it's the nurse in me to marry someone else so I would have someone to take care of. Sometimes I go through the "what-ifs" after my husband's death, but I know I did everything I could for him. I have no regrets and we had a good life together. Hope everything works out for you and your wife. God bless you. You are not alone.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: SnowyLynne

As long as you have DPOA you can do whatever needs to be done.........
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Seattle Marge

Don:

I just noticed you are also in the Seattle area.My husband was at Highline Geriatric Psych for two weeks last summer, and the social worker there did try and help find a placement for him. I have more experience than I wish I did with bad placements, and I would be more than happy to share what wisdom I have learned the hard way,should you be interested...although I would rather do it by e-mail or phone than to publicly name facilities to avoid! All the best to you.

Marge
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: bobby

Don - I don't have answers, but you have been given some very good info. God bless you on this journey - I'll keep you and your wife in my prayers. Bobby
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Mimi S.

Hi Don,
As you know by now we are all with you in spirit.

You have to do what you think is best and absolutely no one is to make you guilty.

You have said both out right and I've read between the lines, that you do not feel capable of tending for her at home. The doctor has also said this.

So, sad as it is, and as much as you want to honor your wife's wishes, you must do what you think is best.

Thank you so much for your updates. We do care and wonder.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

Update - Saturday evening late. Not much has changed. She is still in the hospital and the MHPs have not done any evaluation yet. Maybe tomorrow. Today she was much more lucid and knew some of the time where she was.
She just wants to go home. I am not sure what to do as I would love to be able to have care help and have her at home. It would make her more happy and I am sure more clear mentally.
She would have to be more healthy and stronger so we will see how that goes. I am trying to look at all the options for care.
The Dr. said she is getting much better physically so that is good.
I will update more tomorrow evening after I get home again.
Thanks for your support, suggestions and prayers. (Seattle Marge - you should receive an email from the administrators with my email address and I would like to have you contact me. Thanks.)
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Mimi S.

Dear Seattle Marge,
To get in touch with anyone on the Boards, send a request via the 'contact' above to the Administrator. She will contact that person via private-e-mail with your e-mail address. And the rest is up to that person.

And I agree with your reasonings on disclosing names of institutions, especially those you did not like.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Rkg

Don, hopefully you can take her home. I agree it would probably be a better place for her. I am glad to hear she's doing better. Hang in there! Sounds like your on the road to getting her home with you. Please take care of yourself!
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Seattle Marge

Don:

I have not yet received your e-mail address from the administrators, but will contact you when I do. I can offer one piece of hopeful info...my husband suffered his first seizure a little over 2 years ago, and was in the hospital for some tests. He had come out of the seizure combative and delusional; stayed that way during the course of his hospital stay, and I literally was scared about bringing him home. Being home seemed to help reorient him. It is also easier to research and consider the merits of a placement if you do not have to try and do it in the middle of a crisis situation. Wishing for you that all goes well.

Marge
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Starling

I'm going to suggest a hospice assessment one more time. There are caregivers on this forum who have had the help of hospice for 2 or 3 years. With dementia they frequently can come into the home early.

If your wife is incontinent and bed bound she will almost certainly qualify.

They will give you additional aide time, which would be helpful, but most of all they give you a 24/7 hot line to call for information and in emergencies.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: DonM

Well here is the latest: I will be bringing my DW home from the hospital tomorrow. I have an aid coming in for 8 hours a day and we will see how it goes. She is still suffering from delirium and gets really confused about time and place and who people are if she has not known them before. I hope it will work as she is also a bit paranoid and gets very angry. The hospital will send in PT therapists three days a week to try to build up her strength. Pray that she will be cooperative.
I think the Hospital Dr., the Social Worker and the Psychiatrist think I should put her in a skilled care facility. I just have to try this first and pray that it works for a time. She is still incontinent both ways and the Dr. said that may not change.
I will let you know how the day goes. Thanks again. Anyone with advice related to where I am please feel free to comment.
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: SnowyLynne

You can get assurance from WalMart cheaper than Depends & they are just as good & I think fit better......I used them for a long time before diagnosed with IBS.....I keep them on hand as I never know when I might need them.......They were a Godsend for me......Yes I have Dementia......
Anonymous
Posted: Tuesday, January 17, 2012 3:44 PM
Originally posted by: Rkg

Don, I pray that this works for both of you. But will second Starlings suggestion of a Hospice assessment! It's so beautiful that you are trying so hard to help your DW and hope all your love and effort helps her bounce back. Thoughts and Prayers!
 
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