This feels so different

RNS

I don’t know what I expected exactly but I wasn’t prepared to feel so angry and betrayed.  I found my DH on the bathroom floor last Wednesday .  It was at the same time his palliative nurse was to arrive for her monthly visit.  We decided we should call 911 because he complained of hurting and couldn’t sit up. He was hospitalized with high blood sugar and stroke like symptoms.  The last 3 days have been full of tests and more tests.  It was discovered that he had a brain bleed and stroke. He has gone from being fairly mobile,  aware of surroundings, knowing family, continent, able to read and watch tv,  being a family member to almost bedridden, bring angry and ugly to medical staff,  fighting meds and glucose tests,  not knowing anyone and screaming to be left alone  and not very capable of feeding himself and incontinent.  He will be transferred to a skilled nursing facility on Monday and we will see if he has the desire to get stronger and improve his abilities.  His family is so supportive and caring. I have hired part time caregiving and try to give him every opportunity.  I am frustrated because he’s become so different, disrespectful,  and miserable.  I just had to leave the room and vent.  As I walked out the door he was masturbating.   OMG!  I can’t handle this.

Ed1937

RaeNell, I'm so sorry. Have you looked at MC facilities yet? If not, I think it's time to do that.

Buggsroo

I get where you right. It’s hard not to get angry at all these antisocial behaviours. I cried many times when catching my husband push his feces down the drain, now I am inured to it. I do feel for you, it’s worse when you are caring for someone who is rude, disrespectful and downright mean. I can’t tell you how many times I have gotten the f@#k you. All part of the landscape. 

I imagine you will have to have professional help. I wish you a good resolution.

Joe C.

RNS, Sorry you are dealing with such a sudden change and all the challenges that come with it. Hopefully with some rehab he will regain some of his functionality.

Battlebuddie

  I am sorry sorry that your husband has reached that state. It seems like the stroke has made a progression in the disease. My husband took a similar turn, and Seroquel made a tremendous difference for him in calming him. I was where you are with my husband masturbating . I think it helps to think of him sort of trying to self calm . It sounds like you will have to put him on some kind of med for behavior now. Also, many dementia patients get hospital delirium . They say and do crazy things when in the hospital. Maybe he will return somewhat to baseline when they stabilize him. 

    

jmlarue

What an awful turn of events for him and for you. Those full-blown strokes coupled with a brain bleed can cause some pretty disheartening damage for your DH. Try to hang onto hope that some of these awful symptoms will improve with time to heal and rehab, but do prepare yourself for the possibility that some may remain. Take some time to allow yourself to recover from this trauma. You'll need a clear head to make decisions for his care going forward. As much as you may want to see him return home to your care, you'll need to consider and plan for the possibility that long term care in skilled nursing will be necessary. I purposefully left out the option of Memory Care because most (if not all) will reject admission for someone who is angry, combative, and fights against every help he needs - meds, feeding, incontinence care, etc. These are early days. No one can say how much or how little of his current symptoms will disappear or fail to respond to treatment. Hope for the best, but plan for the worst. Take it from someone who's been there. It can be devastating to come to the end of his inpatient skilled nursing days and still have no firm ideas about where to go next. We'll be thinking about you and wishing you and your DH well. I hope you'll keep us in the loop. You have every right to feel angry and betrayed. We're listening and we understand.

Gig Harbor

It is actually good that he is going to go to a SNF first. Medicare will cover his care for a period of days since it will be considered rehab.

Jo C.

RNS; I am very sorry for all that is happening.  It sounds as though some of  the damage may be in the frontal lobe of the brain which would explain his behaviors and loss of inhibition on several fronts.  How awfully difficult for you.  No matter that we understand the broken brain is causing our LO to lash out at us in terrible ways; it still hurts. 

The idea of him being able to go for Rehab after the acute hospital would be a good idea if he fits criteria for services and if he is able to participate in therapy.   If he cannot, then the service may not continue, so do be prepared for which ways the wind can blow so to speak.

Have the physicians addressed outcome and future outlook for him?  If the physicians feel that he is at high risk for a short length of life, it may be that having Hospice come onto service could be helpful.  Hospice can also follow in nursing homes.  Just an idea.

 It may be that some of the behaviors will settle as time moves forward.  Not only has he sustained brain injury, but he may also be experiencing hospital induced delirium and that can be quite behaviorally dramatic. 

If the masturbatory behavior becomes chronic and is openly in front of others, Buck and Buck adaptive clothing catalog has jump suits, pajamas, sweat suits, etc. that look like regular clothing but secretly closes down the back.  These garments help in such a situation as well as situations where patients keep getting into their incontinence diapers or removing them.  Buck and Buck are online and are very user friendly.

You are very important in all of this; it has been a long and rough road you have been traveling; I am so glad that your family is understanding and supportive.

Please let us know how you are, we sure will be thinking of you and you know we truly do care.

J.

Paris20

RNS, I went through the same experiences that you describe. On May 2, I found my husband in the bathroom, unable to move. His stroke involved a blocked artery. He is paralyzed on the right side. After several weeks in rehab he made very little progress and is now in an independent living/skilled nursing facility. He will never go home again.

Of course each case is different but research shows that the vast majority of dementia patients who have had a stroke (and their likelihood for stroke is higher than the general population) are never able to return home. My husband’s mobility is gone. He can no longer hold an intelligent conversation, cannot keep up with even the simplest story lines on TV,  doesn’t finish sentences because he cannot find the words, and he’s almost completely incontinent. He does not remember the stroke or the paralyzed right side. He has fallen a few times trying to get out of a chair. His sundowning has worsened to the point where the doctor added more Seroquel to his meds.

I was visiting my husband for 3-4 hours a day. I soon stopped that. He has no concept of time anyway. His moaning and complaining have left me drained at the end of each visit. Even though the aides clean him up quickly, the smell in his room lingers. It’s awful. Like everything else with this rotten disease, you need to accept what is but you don’t have to become a martyr to it. Take care of what you must. The rest is optional.

jfkoc

RNA....I had forgotten about walking out of the room....your post brought back a lot of memories. I don't think I was very good at staying in the room. The frustration can be overwhelming.....

Jo C.

Hello RNS, today is the day for your husband's potential transfer; I am thinking of you and so hope that all goes well.

If you have the time and will to do so, let us know how you are doing and how things are going, so hope it will be a be a positive change.

J.

RNS

Hello friends.  I wanted to give you an update on my DH after his hospitalization and transfer to skilled nursing.  We had a long day last Monday but DH was finally transferred from hospital to skilled nursing late in the afternoon.  He has very good therapists and they are working to help him regain any type of skill.  The final diagnosis was a brain bleed deep within the brain on the right side affecting the left side of his body.  A definite weakness is present.  He has minimal recognition of loved ones,  minimal speech but not slurred,  total incontinence, unable to stand or walk without two person assistance,  cannot feed himself and no desire to eat.  The list goes on.  I feel that he may stay in skilled nursing two more weeks at the most.  I have made arrangements for him to live in a long term care private home.  I am so fortunate to have found this wonderful environment for him.  It is 35 min from home but worth the drive for me so he can live there.  I think I am still in shock as to how things can change so quickly.  He had been on the edge for quite awhile but when this happened, he is totally gone-just a shell.  My prayer for him now is for mercy.  I know his wishes and I don't want him to suffer.  I will also have Hospice evaluate when he leaves skilled nursing.   I hate this disease and I hate that we aren't allowed to show the same compassion to our loved ones that we can give to our aging  and sick pets.  Thank you to everyone for your concern.  This is the only place I can come where everyone "gets it".

Ed1937

RaeNell, thanks for the update. I'm sorry things have progressed the way they have. Will that private home take him if he needs two people helping him to walk? You should make sure about that before you take him out of the facility he is in now. 

I completely understand what you're saying about treating pets humanely.

RNS

Hi friends.  I want to give everyone an update about my DH.  My DH spent two weeks in skilled nursing.  This was not a good situation and he did not receive adequate care.  I moved him to the private home long term care .  It was clean, quiet and care was excellent however every day DH was failing.  I spent all day Friday, Aug 19 with him.  He was losing all capabilities before my eyes.  He wanted to hug me with his one good arm.  I hugged him and kissed him for a long time.  He became tired and was put in his recliner.  I stayed until he fell asleep.  The Hospice nurse made her visit that day and said his vitals were good.  I received a call from the nurse at 8 AM the next morning that he had passed away.  I was absolutely stunned.  He had passed peacefully in his sleep.  DH died 3 weeks and 2 days after his first stroke.  I think he continued to have strokes which eventually took his life.  This last week was a whirlwind of planning service and dealing with so many things.  I am thankful that he didn't lay for weeks or months.  I know that passing in his sleep was a blessing.  I will now seek my new life and a much deserved rest.  Thank you to everyone that gave me advice, encouragement and understanding.  This discussion board was invaluable to me.  God bless all of you.

RNS

Ed1937

RaeNell, I'm so sorry for your loss. It will be very hard for a while, but I pray for strength for you in the upcoming days. Nothing prepares you for this.

Joydean

RNS, please except my heart felt condolences on the passing of your husband. I pray you and your family find peace and strength in the coming days. 

M1

Condolences RNS.  I'm glad for both of you that he didn't linger.  Peace to you in finding that new life.

David J

I am sorry for your loss, but glad you got that hug and a kiss.

ImMaggieMae

RNS, I am so sorry for your loss. That hug and kiss sounds like his goodbye. It’s a blessing that you stayed until he fell asleep.

Pat6177

RaeNell, please accept my sincere condolences for your loss. It’s something we can never really be prepared for. Wishing you strength to walk thru the upcoming days.

Dio

My condolences! It's a blessing to be able to pass peacefully. Your DH is in a good place now. Hope you can begin to live and take care of yourself for a change.

Hoot619

Your prayers have been answered but I know   He will be  still on your mind alot. Remember his suffering is over a now it's time for you and the good memories from before to give you peace.

Faith,Hope,Love

Please accept my heartfelt condolences.  I will pray for you as you start a new chapter in your life.

jmlarue

My heart aches for you. No matter how prepared we think we are for the end to come. and for that merciful release for our LOs suffering, the reality is always heartbreaking. Please accept my sincere sympathy on the loss of your husband.