How often did you or do you all visit your loved one in their ALF or Nursing Home?
Dad, who lives with me, has become incontinent (more than just an accident here and there) and that's where I draw the line. Another couple weeks and then he's moving into a Veteran's Home. I'm going to begin the paperwork tomorrow. There are two VA facilities in the state and we're 2-2.5 hours from the nearest one. That's a heck of a commute, but he is (was??) my dad and I want to visit with him, and I also want to make my presence felt because I've heard that will decrease any chance of neglect.
So...any thoughts? Thanks everyone, it's been forever since I've posted. This has been a LONG two years living with dad and this board has helped me through the tougher times.
I visit my husband, now stage 6, on a daily basis BUT I am 10 miles from the ALF. My visits are short sometimes, today for instance, as little as 10 minutes. I think the importance of the visits is the relationship I have developed with the staff. It is important to me and I think to his care, that he is not thought of as anonymous but rather as Mrs. B's husband.
Given the distance you will have to travel you obviously will not visiting on a daily basis but when you do (weekly?) I would advise that you make a point of chatting with the aides. They are the ones who will have the most contact with him. I would also make your visits on an irregular schedule i.e. an occasional 2 days in a row and try to vary the days.
This is a rough time but he will be getting care 24/7 and you will be able to relax a bit.
My stepmom was just put in a NH 3 weeks ago and she is only about 20 minutes away. One of the family goes to see her every day, to see her and visit with her, and also to check on the care and staff. They seem to now a few of us and greet us when we come in. I go different times of the day. I may only stay 10 min or may stay an hour, depending on her awareness of me.
I tend to visit every other day or two days; sometimes three. Kind of depends on my own schedule.
I have the good fortune of living just up the street from the NH, so I can walk there in about two minutes. That being said, I was going over there way too much in the beginning...sometimes twice a day. It was getting to me, and I wasn't taking care of my own responsibilities here at home. I had to back off a bit, and mom knows no different.
At the end of this month, I'll be doing double duty as my aunt, (mom's older sister) is having her hip replaced and will be there for rehab on the other side of the building. I'm sure I'll be having some "calgon...take me away!!" moments!
Welcome back to the board UJG. Sorry your dad has deteriorated but glad you have found a place for him. I do hope his transition goes well....
I am 3 hours away from my parents (Dad with vascular dementia and Mom with Alzheimer) who reside in Assisted Living. I try to make the trip at least once every two or three weeks depending on how they are doing. Sister 2 is about 2.5 hours away and she tries to visit on an alternate weekend. Sister 3 lives in the same town as my Mom and Dad and visits about once a week. Sister 4 also lives in the same town and visits 2 to 3 times a week because she takes care of the appointments and is on the first call list. It ends up with them having someone there about every other day or every third day. The daily visits are usually short, the weekend visits are usually longer because of the distance we drive. I have found that a visit in the morning, let them settle a while, eat lunch, and then go back for a second visit in the afternoon works better than an all day visit.
I do agree that it is important to get to know the staff.... especially those that work with your father. Being long distance it is nice to call and get somebody that you know on the phone. If they know you are involved in cooperative they tend to be the same. You can give them insight and they can give you insight.... both of which helps with your father's care. You can also watch for anything that doesn't seem right. If so, don't make assumptions but investigations to find out what the truth is. Things are not always as they appear.
Good luck with your Dad.... I hope his adjustment goes well. I will keep you both in my thoughts and prayers....
I was long distance as well. I know 2 plus hours is a long drive, but resist the urge to do a one day marathon visit to make up for it. I figured out that my Dad's schedule was way more important to him than anything else, and visitors just threw it off.
Also, it depends on how your Dad is doing, if he knows who you are and enjoys the visit that's great. If he doesn't - he's got someone in his room and he has no clue who they are. That's pretty stressful. My Dad always knew who I was - but he just wasn't up for anything more than a short visit.
I'd suggest going in the late morning - visiting for 30 minutes or so and heading out while he has lunch and afternoon nap. (We tried having lunch with my Dad - but that wasn't part of the routine.) You go get lunch yourself, and buy any supplies he needs - plus a treat for him. You return with the treat and stay another 30 minutes or so. You visited him twice in one day!!!
The other posters are right - getting to know the staff is crucial. If they know there is someone agressively looking out for him, they can let you know of any issues and give you a heads up if his condition changes.
In our case, my brother lived nearby and went to see Mom 4 times a week. At first he went every day, but then reduced it to 4x after he realised he was neglecting his wife and family.
He only stayed an hour, usually taking her outside in her wheelchair, pushing it around, and sitting with her to enjoy the outdoor air even in winter.
Since I live in Indiana and the NH was in NY, I flew out there 3 or 4x a year. I stayed with my brother but spent virtually every day with Mom at the NH for one week. I got there in the morning, stayed through her lunch hour, and until maybe 3 PM when she dozed off.
Until the very last visit she knew who I was - after my brother told her. That last time I had my daughter and son in law (also from Indiana) with me. We had a long visit on the first day, just sitting around in the lounge of the NH because it was raining that day --- and suddenly she called my son in law by name and said "D, I almost forgot you!" It had suddenly come back to her memory who he was. That was a highlight in our visit. The remaining days of our visit, she didn't seem to know who we were, but we followed the usual routine. My daughter has more strength in her arms and shoulders than I do, so we took Mom outisde of the NH complex (with permission and disabling the alarm) and pushed her up and dwn the hills of a nearby housing development. She made a very intelligent comment - "these houses are so big and so beautiful, but there is never anyone home."
My daughter also gave her a manicure, put nail polish on her nails, rubbed hand lotion into her hands. This was the last time either of us saw Mom alive.
Many other relatives went to see her, coming as far away as from SC and Germany. She always enjoyed visitors, but later would say to my brother, 'some woman was here yesterday and I have no idea who she was'... Or if he saw a new bouquet of flowers, and asked who brought them, she said 'nobody was here'. Yet during the visits she brightened up and enjoyed them. Mom was always a people person, surrounded by friends.
My brother and I had told family members that it would be better if they came to see her while she was alive, and skipped the funeral. Most of them both visited and came to the funeral.
I am thankful for all the times I went - she ws in the NH 2.5 years and I visited her 8 times, each for a week. I do not regret the expense or the 'lost' time, although it was often depressing.
My Mom and Dad were in Minnesota and i live in Virginia. When Dad was starting to fail from his Anuerism and Mom from the Alzheimers..I was flying home every 4-6 weeks, and staying for anywhere from 3-7 days.... But when I wasn't there I was calling every day, or the staff would v\be calling me-about one parent or the other.
I developed a great relationship with the staff, both the nurses and the aides for my mom and they would call me when Mom would do something funny or tell the staff off. I would get calls to be let in on the latest joke. I always made sure to drop off big boes of cookies or candy for the staff as a "thank you" for the extra work that they did for Mom. It made all the difference in the help that I got-and in report ing to me about the bad help that was on Mom's rotation also! It enabled me to get rid of the people who didn't do the type of care that I felt was needed for my mother.
Make sure that you call during all different shifts also, so that you get an idea of how your dad is doing with the diffferent staff.
And drop in at different times. If they don't want you coming at a certain time, ask why. There should be an open door policy for you..
Make sure that the VA home you are moving him into has been well certified. Some of them have had problems in the past few years. I know that they one in Minn. was in rough shape and had to be overhauled completely. A sad comentary to the plight of our veterans that served our country!
As I was reading your posts, something jumped out at me...
Martha, was your mom able to articulate a SENTENCE toward the end? I am aghast at that!! Daddy cannot get more than 3 words at a time towards the end goal of a sentence! And they make sense to him in his head, but he cannot articulate more than 3 words at a time!
He will say, "You know, I..." and never finish, or (this is a new behavior) echo what we just said. Like, "Good morning, daddy!" will get the reply of "Good morning daddy!". Or, "Whatchu up to, daddy?" he will say, "Whatchu up to daddy?". But independant thought is never more than 3 words at a time. Often, the 3 words end with, "dammit" because he knows he isn't making any sense at all.
Is this Common? Do most dementia patients take this path? And I bet I can expect even the 3 words to go away, huh?
And Martha - I am so HAPPY for you that your mom was able to speak in meaningful sentences! What a gift!
My Mom was able to speak in sentences. Often it didnt make much sense, but to her it must have. She never did have aphasia, the inability to find the right word. That is common in Alzheimer's Disease, but what she had was senile dementia, or old age dementia.
In fact I had a conversation with her on the phone four days before she died. It was Christmas and I was chatting on and on - not really expecting much of an answer, as she was often uninterested, or falling asleep, or just not connecting what one was saying to anything that had to do with her. My brother had dialed my number on his cell phone and I was doing all of the talking .... I mentioned the people who were coming to my house for Christmas. And then she said "I wish I could be there.'' It was a very moving moment for me. She died on December 29, just a few days later, and was sick with a fever and unable to speak for the rest of the 4 days of this life.
Yes, it was a gift that she did not lose the power of speech, although often her remarks were odd, irellevant, or disconnected. On most of my visits to the NH she talked about people she had seen recently (often people who had died decades earlier) etc.
My neighbor's sister has that type of dementia where she cannot think of the word or uses some other word, or stutters, and you can see the frustration on her face, trying so hard to communicate but failing. But she is doing well at the AL, eating again, putting on weight!
I am sorrry your Dad is struggling so. You are doing well ... in spite of the frustration.
My Dad... well into his vascular dementia has no problem with words either. Sometimes he says the most amazingly thoughtful things but doesn't remember what he said once it leaves his lips so don't ask him to repeat it. He also talks nonsense... constantly. He loves to talk. He will ride down the road reading all the road signs then turn around and ask where we are going as soon as he reads the sign for the next city. He also talks about seeing relatives that are no longer with us and things we don't have a clue what they mean but they are well articulated sentences.
So far Mom still talks well even though there is confusion behind what she says. I have noticed lately that she is having some trouble with a few words. I remember Nannie telling me her pocket book pulled down hard. She lost the word HEAVY very early and eventually lost much of her speech. Mom seems to be following that same pattern.
It all has to do with which area of the brain is effected by the particular dementia. With ALZ speach, language, and comprehension is usually spared in the early stages. Later word finding difficulties make speech difficult. Speach comprehension goes in the late stages. So what you may be seeing is an inability to comprehend speech. He may not understand what you are saying as well as not being able to find the words necessary to make a complete sentence.
Just another way each is different yet the same.....
You probably won't find this since it is so long from when you wrote your question, but I would like to tell my experience about the VA.
My husband is in a VA home which is 230 miles from me. I visit him every other weekend but the drive is rough on me He is always happy to see me but he has no concept of time so he doesn't wonder where I am. He has been there over a year now and they are wonderful with him.
He was in another VA home much closer but did not do well there. The staff didn't know how to handle his sometimes combative behavior except by drugging him or sending him off to a psych unit. They had no compassion and were not friendly at all. Some of the staff seemed resentful when I asked them to clean him up .
The VA he is in now is great. The staff is so caring and they know how to handle him . He has not had one violent incident since he has been there and is always happy and joking with everyone there now. The staff is always smiling and ready to help even though they are so busy.
I still feel guilty about having him so far and not seeing him often but I am satisfied that he is in good hands.
As long as he is in the best possible facility, being care for with compassion, and he is happy.... that is what truly matters Ceecee. You go as often as possible and that's all you can do. His daily care is the most important because as you say.... he has not time refence. It is what happens in the moment that is important to him. I am glad you found the right place for him and hope he continues to do as well as he is now
Three brothers who live more than an hour away made the decision to move Mom to their town (from here where I live) 10 years ago. I knew early-on it was for their convenience...because the original plan was for Mom to have daily visitors. One brother lives 1/4 mile away...one 5 min. and one 15 min. away. That worked well for almost the first year. I made the drive down twice a week for several months, then, as the disease progressed, decided to only go once a week. For many years now, I am her only visitor.
Not one time have I resented the time, effort, and emotional toll on me...but the rest of my siblings absolutely ignoring Mom has been difficult! There are also 2 other siblings...a sister and another brother...who make no attemt to see her when "home" for a visit.
Even tho she has not recognized me for about 5 or 6 years...there is often a realization that there is someone who loves her visiting...and tiny miracles DO happen once in a while! Her distinguishable language departed long ago...being replaced by little rhyming phrases that her caretakers sometimes chant back to her...she seems comforted by the "pitty-patty-batty" phrases. On the rare occasion where she would still say a short garbled sentence, I'd simply repeat a word back that I recognized to her and that seemed to bring her comfort. When mentioned about letting the caretakers know how much they are appreciated...that is SO IMPORTANT! I never leave without letting them know! I've observed the same wonderful care to the clients with no visitors where Mom is...but where FIL is placed, this does not seem to happen. Sad.....
Last Thanksgiving, my daughter was visiting from across the country...she hadn't seen her Grandma for 2 years. When Mom heard her voice, she picked up her head...when my daughter bent down eye-to-eye...Mom gave her a beautiful smile and kissed her OWN palm, then reached her hand out to my daughters cheek and placed that "kiss" several times! I had not been able to get any response from her for several months before that.
Recently, a cousin (my age) who'd not seen her for many years was visiting and asked if I'd like to go with him on his visit. He used to play guitar and sing professionally...and knew Mom loved music. It was an outstanding visit! She looked directly at him...tapped those skinny little toes...and reached out to help him finger those notes! (she used to play mandolin) He carefully lay the bottom of the guitar against her arm so she could feel the vibrations...she put her head back and closed her eyes...so comfortable in the familiar rhythm. Another miracle!
I think each of us have to decide what is actually feasible to our particular situation...and not feel guilty when we know we're doing our best!
One other thing...I found that by simply saying "I'll see you in a couple days..." (especially in the beginning) Mom seemed better than if I mentioned "week". Hope this helps......Pam
Last edited by petal*pusher; 10-26-2008 at 09:00 AM.
Speaking of visits.... I am so pleased with my daughter. She called me yesterday to find out where the fresh market has moved to. I thought that was an odd question until I realized she was just blocks from Mom and Dad's and wanted to take them flowers when she visited them. Her boyfriend's grandparents are only a few mines from hers so once a month or so they make the 2 hour trip to visit with both sets of grandparents. I called Mom later and she was elated because they had stayed for a "long time". Not just a run in and out visit. My daughter is in school full time, working 30 plus hours a week, and has a full life but she still finds time regularly to visit with her grandparents. Three other grand daughters that live at a distance also visit with the great grandchildren. It amazes me that the four grand daughters that don't live close by visit more than the two that live in town. My sister explains this by saying..... they don't know what to say or do when they are there. Neither does my daughter but she makes it up as she goes It is easy to avoid what we don't understand or feel comfortable with. Eventually it become a habit that is somehow justified in our minds. I actually feel sorry for those that are missing those magical moments.
Speaking of a magical moment. My Dad has not been able to hear me on the phone in a couple of years. I called yesterday morning and he answered the phone. He heard every word I said. It was so nice to talk to him I didn't want him to give the phone to Mom. I later figured out.... he didn't have his hearing aid on. Maybe I can use this to talk to him again. It definitely made me smile inside and out.
On the same topic I have noticed that a couple of my sisters tend to avoid Mom when she is not in good humor. I guess with hopes that the moment will pass and they don't have to deal with it. I find myself intentionally calling when I know she is not in good humor. Hoping my call will make it better. Again. it becomes a habit that is somehow justified in our minds. I just find it all interesting