Had to place my DH six weeks ago after an almost 11 year struggle. He had arrthmic episode three months after we married in 2000 and it's been all down hill from there. He has advanced prostate cancer, diabetes, significant cardiac disease Cabgx4, aortic stenosis, cardiac arrest, too numerous to list episodes of delusional and paranoid behavior. The precipitant of placing him was depressive psychosis, a fall with subsequent neurological events affecting his already tenuous balance,and pneumonia. I did not sleep for a week....I could go on and on but needless to say you all know the routine doctor after doctor, medicine after medicine. I finally decided that now was the hour. Since we live between two states, I arranged admission to a dementia care facility in Maine which is our primary residence and drove him there. His dementia is such that I can be right in the room and he will ask if I've seen his wife.. He thinks I sleep there and I can easily leave by telling him I'm going to get groceries for supper..all the while escorting him to the table where he eats. Everyone I know, including his family think he should have been placed long ago but like all of you..you hang on trying as best you can to hold it all together. This is now week 6 and the problem is he is crying like a baby, threatning to harm himself, saying that I promised him I would never leave etc.. I have asked staff for a psych eval which, tomorrow I will demand, but I wonder how others have crossed this hurdle..He likes his room which has all his treasured possessions, he likes the staff but he wants to be with me. It's like part of him has come alive and speaks very cogently and I am beside myself. I know what I have to do but.....I wonder how others have dealt with this kind of situation. The initials in my name lcw stand for licenced social worker and I ran facilities, did education and family therapy etc. but am find walking the walk much different than talking the talk..Please share your thoughts.
jrlcsw I was a home health nurse who worked with the elderly. I did not recognize FTD symptoms in my husband for quite a while and found myself not coping very well. Losing your life partner is not something you expect will happen to you. On this site you will find many others who are going through the same pain that you are. Knowing that you are not alone really helps. Realizing that there is little you can do to stop the speeding train comes hard. Once you give into the monster and stop blaming yourself for things that are not of your doing things will be easier.
jrlcsw, where in Maine are you. My wife and I live in Blue Hill. The closest dementia unit is in Bangor (1 hour drive), but she is too far along to qualify for the one I liked best.
I agree with your statement "walking the walk (is) much different than talking the talk". As a primary care physician I took care of patients with Alzheimer's Disease, but until my wife came down with it (detected by our daughter, not by me) I had no clue as to what the disease did to the caregivers.
Marsh, I live in Yarmouth..just north of Portland. Do you by any chance have a relative named Dottie in Charleston SC.. actually Seabrook Island.. She has a family member, I think her sister, in Blue Hills It would be such a co-incidence.. Thanks for responding
Welcome jrlcsw! You have surely landed in a soft place full of caring people who will hold your hand every step of the way. Sorry you have need to be here. After the psych eval, insist that they work to get him on medication that will ease his agitation and give you some peace. Might take a few tries to find one that works. Try to be patient with the process. I placed my DH (dear husband) 8 months ago and at first it was #%@$, but after experimenting with meds and with time he is now living peacefully in his care home and is no longer agitated. Only you know what is best for your situation, but in my case --for a variety of reasons-- I did not see my DH for several months and spoke with him only rarely until things calmed down. I saw him today for a very nice Easter visit and am now home (alone but at peace) knowing he is well cared for as I can no longer be the hands-on caregiver. I hope in the months to come that you and your DH also find this peace.
I agree with Weejun's approach of appropriate medication and patience. There comes a time when you, the caregiver, know that you can't go on, and that somehow, by hook or by crook, you have to get care for your loved one. I know that they would prefer that you be the one that gives it, but that isn't always possible. You know it, they don't, and even after they've settled in, you will still feel guilty at times. But that's the price you have to pay to make sure they are cared for and that you can survive.
Welcom, jrlcsw! (Difficult name but we can all use a challenge other than dealing with spouse). Yes, many have said it, but I agree: just give it time, don't give in, this too will pass and eventually he will adjust. Can you stay away for a few days?
jrlcsw, that would be my wife's sister, Dot Bostock. She lives on Seabrook Island. How do you know her? I will be seeing her the first weekend in June when I go to our daughter's retirement party in Chicago.
jrlcsw, I placed my wife in a LTC facility 10 days ago. I feel as though I have abandoned her and don't remember how hard it was with her at home. She has had 3 episodes banging her head off the windows in her room, telling the other residents that she will kill them and threatening the staff. Every time they phone me I look at it as an opportunity to rush in and save her. I know in my heart that this is impossible but am always hoping for a reason to get her home. I am going to our Dr. this afternoon to try and get a handle on the proccess from here on in. This has been the hardest thing I have ever done in my life and I am having a hard time even going in our home. I will do as we all must, put one foot in front of the other and keep trying to continue on with life, even though it is hard. I like Weejuns post it gives me some hope.
These blogs are so helpful for me... My DH still dresses himself, takes care of bathing and personal habit's after a fashion... in that there is a lot of cleaning up after him for me..I let him do whatever he CAN do but the last month he has become so verbally abusive.. Its really beating me... I get out often, have to,,, but the minute I come thru the door , there is some other accusation.. I certainly see to his every need and know in my heart that a nursing home would not come close to the care I give him.. so I've started him with another Dr and we are in the process of testing for a reason for his behaviour... MRI' and CAT scans this week to see if he's had a series of strokes to his brain.. anybody every had this???... The positive side, if there is one,is hopefully, I'll get enough answers to warrant placement... To me it looks sooner than later... Between a rock and hard place just as you all are...I don't feel right doing this but know that my health and mental outlook is important too... I feel guilty for even admitting THAT..
Yes I know it's a process and I have to be patient. I have stayed away, once for almost a week at the suggestion of the nurse but then he was so tearful etc. that they thought I should visit. I did and then the next day he threatened to kill himself..triggering a suicide watch. He was just desperate. He is terrified when he does not see me and hears people telling him I have run away to Europe with some guy on a yacht (that sounds nice right about now LOL), or that a lawyer has called and reported that I want a divorce or I've been in a car wreck etc.. I've tried to get them to treat the delusional behavior but they are very slow to respond. This is my frustration. Thank to you all for being there..it means so much. BTW Jeanette, my real name is Jeanne and I'll try to change that on the account page as jrlcsw is quite putoffish aha a new word!
Marsh, I have been a volunteer in a Respite Care Program run out of Church of our Savior in John's Island SC.for over ten years. Dot is also a volunteer there and has told me she had a sister in Blue Hills Me with Alzheimers. When I read your post I figured that you might be connected. We live on Seabrook Island during the winter and in Yarmouth in the summer. Obviously that will be changing. Say hi to Dot.
This is a really difficult thread for me. My DH has been placed in a NH now since March 4, 2011. He has had some pretty rough patches..lots of falls, lots of weight loss, extremely quiet. The nursing staff, Doctor and aides have all worked together to find creative solutions to these issues. I am really impressed to see the team work together and the progress my DH has made in adjusting to his new living arrangement. It took weeks for me to figure out the effective chain of command for my questions/suggestions/concerns. It has made a world of difference to use their chain of command. Talking to the aides or nurses was not effective or really helpful, but talking to DON and Doctor and then setting up care meeting was VERY effective. I am currently extremely pleased with his care and their creative approach to helping him stay safe and comfortable.
My recommendation is a consult with DR and a care-meeting with all directors to have a multi-disiplined approach to your loved ones distress. Oh...and it does take time...lots of it...my DH is adjusting better than I. But I let the NH do their job and I do not go in every day.
Selwynfarmer. Wow! That must be so difficult. She's obviously very frightened. Whether acting out or acting in their pain is so heartbreaking to watch and you do want to rush in and rescue. Also agree that this is by far the most difficult thing I have had to do in my life. Like you I've forgotten how hard it was at home. I know in my heart that this is the best place for him but to see him cry and sob so desperately breaks my heart. You do feel like you have abondonned them and yet what do you do? It's an awful feeling but I also know this whole thing like everything in life is a process and like you said we've got to get up each day and put one foot in front of the other knowing that it will get better. Hopefully our LOs will get some pharmacy intervention soon to modulate this terror they feel being and give us a bit of solace at the same time. I am at week six and the road is still rocky. I feel like a ping pong ball being hit from both sides..Up and down..up and down but I do know it's going to get better.Good luck with the doc and let us know how you are doing. You are in my thoughts and prayers.
Peggy, Sorry you are having such a difficult time. Is your DH on any medication for agitation etc. As this awful illness progresses it destroys area of the brain that control emotion and modulate behavior. There are drugs that can help. Do you have a geriatric psychiatrist in your area? You say you feel that nursing homes may not meet his needs but you may be surprized. Dementia care facilities especially do a great job. Sometimes I think we as caregivers go far beyond what is necessary especially if we tend to be perfectionists.... I happen to be one :( I also felt so guilty and knew I could not go on but fate intervened with a fall, small stroke and pneumonia all within the same month and I had no choice. Now DH is back at baseline but I know in my heart that he belongs where he is and that I have to have enough fortitude to see the process thru. So maybe you will get the answers you hope for..Good luck fellow traveler!
Sheltifan2 Thanks for responding. I agree totally with your perspective. Is your DH on an Asst. Living unit or a LTC unit? It's easier to use your approach on a LTC unit but I'm finding that Asst. Living units are a lot more loosey-goosey..(no insult intended). Care plan meetings on ALF's are held q 3 mos: however they can be convened anytime there is a need. The trick is advocacy and that can go a long way towards meeting ones needs...Your point is great in that it empowers people to know that there are ways to get your needs met if you feel things are falling thru the cracks. The guilt thing has got to be the biggie for all of us and no matter what anyone says it's easier said than done. Be well and I'm so glad that things are easing for you.