Finding a new home for dad

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Thanksgiving 2008 – seems so far away now.

I have mentioned before in previous blogs that one of the things about a progressive degenerative dementia is that it does not fade. You don’t heal from this. You just watch it steal someone’s life slowly. It is a terrible thing to watch a loved one go through this.

It seems like once we have dad’s care down and things are stable, he suddenly changes and we have to run about figuring how to best care for him again in the face of a constant changing tide. We had already moved his home health care workers’ hours to cover when he gets out of bed in the morning to the hour he needed to be put in bed later that night. However, one January morning, his primary care person got there to find him wandering in his driveway, in pajamas, confused about where he was and what was going on.

This led to the Band-Aid measures of reversing locks on doors. There is a sign in his room reminding him to stay in bed until a health care person arrives in the morning. We even called a security company, thanks to a friend’s suggestion. But again, it seemed like these measures were not dealing with the real issue. Dad now needed 24-hour care.

Our primary home health care person is amazing – really she is. She was willing to find a person for an overnight position and get them going. However, she is only one person. What happens when she is on vacation and the overnight person doesn’t show up? Do I then need to go over and take on those duties? What if it is a few nights in a row? These are all scenarios that plagued the minds of two people, my husband and myself, who already have found our lives irrevocably changed – and by proxy those of our children – due to the years of dad’s care.

One Saturday morning over our coffee, we both fell into another slump – we get those often with the last few years we have had. We just felt powerless to understand how to best serve dad and yet be able to move along in life with our nuclear family of five. We needed something different. We needed something different for our lives at this point. We prayed hard that morning. We felt very lost.

Whatever your beliefs, we received a strong message back that we should consider permanent solutions for him this time. We went and relooked at the memory care places in our area again that very Saturday. When we looked at them before, about a year and a half ago – they seemed like “too much.” This time, it was different. This time, the way they were structured and even the cost, no longer seemed like too much.

We fell in love with one place in particular. It was new and only serves those with dementia. We both felt like this was exactly the place and care that dad needed. Of course, then you have to ask that scary question, “What does your waiting list look like?” She answered back, “Because we are new, we had room for awhile. But now, we only have one room left, and it is for a man.”

We thought and prayed on this for a few days. We talked to my sister about it and she was very supportive. Eventually, we went back – still found we loved the place, and signed up.

This is not an easy transition. Telling our wonderful primary health care person has been the most difficult step so far. She is like part of the family and if we could clone her, we probably would have gone that route.

Someone asked us what we will do if dad hates the place. We aren’t really sure. But I might get a little selfish sounding here. We need him to like it or at least be okay with it. Right now, our family needs to be able to move on and make some decisions that don’t have my father in the forefront anymore.

I love my dad, but it is time for a new phase in my life. For me, for my husband, for my kids. It is time for dad to have a new home.

8 thoughts on “Finding a new home for dad

  1. I am so very sorry. This is such a difficult decision. I can personally identify with the pain of this moment. You will gather needed strength to ensure safety for your Dad.

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  2. As you grow older 2 different things can happen
    1. Your mind stays healthy and your body deteriorate or
    2. Your mind goes and body stays healthy.
    Luck both remain the same.
    Ours problems started when we reach 75.

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  3. Thank you so much for sharing my father has LBD and we are struggling to help him and ourselves through this horrible disease. When people ask me how is your father I actually can’t speak because the story is so so sad. My dad had dementia for the past 7 years and my mother was his primary care giver. Fortunate for them they were able to still go back and forth between Wisconsin and Florida, and my husband and I traveled with them to make sure they were settled in each season. Last year my dad started to get worse and we determined that they should sell their house and buy a condo and move closer to where I worked and lived so I could continue to drive them to appts and help at home. The condo next to my parents came up for sale and my husband and I decided perhaps we should sell our home and if possible buy the condo right next door to mom and dad. By the grace of God our home sold in one week and we were able to move next to them to provide more care and security. My husband and I both work full time but this allowed us to be closer. I thought I had it figured out, that while in WI I could be there and when I take them to Florida they would still be ok. Mom could handle it. Now mind you my father was already at the point of paranoia , bathroom issues, agitation and upset about swallowing issues, unable to work the remote and talking in a confused state, we weren’t familiar with LBD yet . This last winter when getting ready to take them back to Florida mom was not certain they should go but with both of them having horrific arthritis it was the best answer for now and we could still get dad on the plane. (We did have in home care for dad to help mom with the cleaning cooking and care for dad in Florida and WI). So now in Florida while very very hard on both mom and dad dads care became more challenging. Dad would have sundowners and mix up nights and days and the medications being prescribed were for dementia and Alzheimer’s. Bathroom issues progressed and mom was worried 24 /7 so we increased the help in the house. My father complained about a tooth ache so mom made the dentist appointment and the caregiver and mom took the trip to the dentist to find that dad needed a root canal and had two cavities . Started the root canal and came home within days dad developed bacterial pneumonia and was admitted to emergency. I grabbed a flight went to Fl and dad stayed in the hospital for over a week. In the hospital they took away his meds that he was on at home that were somewhat working and change them entirely. The first night he was there they told us that he had gotten so agitated I had to give him Haldol Ativan and depakote. From this point forward he progressed significantly worse. He started to have a hallucinations that were beyond imaginable . The hospital required he have a sitter 24 hours a day. Little did we know this is the beginning of not ever being able to come back home. You run into so many roadblocks with this disease while in the hospital in order to move him to rehab he had to not be with a sitter for 48 hours. We made that work with family sitting with dad and then he was able to be moved to the rehab then in the rehab they change his medications once again you tend to lose control when you are in these situations of the type of medications and the care that that your loved ones are given. We hired private duty nurses 24 seven to care for dad while in rehab he then moved from rehab to a memory care facility. We had thought perhaps with the memory care facility we could pull back on the 24 seven care but we have found that while in there he need someone with him 24 hours a day seven days a week. The money is amazing with respect to the cost because insurance doesn’t pay for any of it. We are trying to figure out what is the best way to care for dad because you always hope that you can still bring them home someday and living out of state the guilt is immense , I have traveled down twice since and are going again next week. I feel so sorry for my dad because when he is lucid and has his moments of clarity he knows what’s happening to him and he can’t control it. It is so scary for him because these moments are becoming less and less he sees hallucinations in the room he has paranoia he can’t care for himself to use the restroom or to feed himself or take a shower he’s afraid and frightened of the memory care facility he wants to go home he cries at times now for an hour hour and a half each day , I’ve never seen my father cry and he’s 81 years old. The insomnia is terrible there’s one point in time he was up for 38 hours straight and just kept pacing and pacing and pacing with his walker. And I didn’t mention buddy has a metal and ride in his back and six screws so the pain in his back is terrible and he can’t communicate that. There are more stories to share but what my heart hurt the most is we cannot find the medications that work for his form of Louis body dementia and all of the medications that would normally work for dementia have the reverse effect on him so were unable to find a way to give him peace and relaxation he has gotten very very agitated and as I mentioned the insomnia is bad so I’m just looking for any answers with respect to medications we will keep trying, praying and working towards answers to give my father peace.

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    • Sorry I meant to say the dad had a metal rod in his back with six screws so he has severe pain 24 / 7 and with respect to the medications in the hospital they prescribed them and told us they had to give them to him. Sorry just looking for answers to stop or at a minimum provide some kind of quality if life for my father .

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    • The hallucinations are one of the worst things about LBD. For one thing, it makes it very different turf than alzheimer’s and so, while I can find lots of info on alzheimer’s there is not much out there on the hallucinatory aspect of LBD, We were told, with aspects to meds, that if you treat LBD like it is alzheimer’s or like Parkinson’s, the hallucinations can get worse. Now that they are saying Robin Williams had LBD I wonder about him because they were treating him for Parkinson’s. If you have ever experienced someone having full on LBD hallucinations – the whole idea of someone committing suicide in that state looks very different and makes the public’s argument regarding “was he selfish?” utterly ridiculous.

      I was contacted by http://lbdstories.com to put my story up there. I never even knew that site existed before. I urge you to do the same. Thank you for taking the time to write them down.

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    • Oh, and, I really probably should write a full out story about dad because most of the details only our small family know.

      A word about care. My dad had a heart attack this week – probably the same day I posted this. The hospital also has him with a one on one person. Clearly the hospitals take LBD seriously and I guess this is their way to avoid all our restraining someone. It is really odd.

      So many people are like, “why don’t you just put him in care?” And for some reason everyone thinks that insurance pays for this. IT DOESN’T! The place we are placing dad is really cool – and it is only private pay. This means that if he didn’t have the money – or we didn’t, he would not be able to go there.

      It seems like there is a bit of a general amnesia settling upon people in my generation. Considering how many people they are predicting will have dementia, I don’t think that society understands how there is no good solution out there.

      haha, okay, ranting done for the day but, you made me realize there is a lot more to this story that I still need to write.

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  4. Pingback: An Update on Dad |

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