Caregiving and Reality

Hello @anncgrl Nice to e-meet you here. I am sorry to hear of your caregiving travails. You are totally correct! Caregiving ain't for wimps and it is often overwhelming when conflicting demands all fall on the caregiver at the same time. Seems to happen all too often!

I was one of the secondary caregivers for my MIL who had frontal temporal dementia and the primary caregiver for my wife for 14 years while she fought brain cancer, which gave her many dementia-like symptoms. I am not a medical professional in any way, shape, or form so what I say I only say from the perspective of a fellow caregiver.

In our case we did a couple of things around the stage you are at. First was to get a hospital bed to help contain my wife. We did one of the air mattress variety and while she was very upset at first, we had the hospice nurse tell her it was 'doctor's orders' and she accepted it. Made a huge difference and kept her safer by far.

One of the other things we did was introduce adult diapers and cut down on the layers of clothing. Easy on, easier off was my mantra. I also introduced drip pads on the floor next to the bed and in front of the toilet. Our hospice folks provided them for us by the packet and they were a godsend for easier clean up.

I heard the same warning from our nurses and kept hand soap on every sink, hand sanitizer on every counter. Still have bottles of the stuff hanging around the house, but no one who visited ever got ill nor did I. Caregiving is tough, caregiving when the caregiver is sick is nigh near impossible, so good for following that advice!

I am writing this at 3 am --- I still am up most nights as my body clock hasn't given up my caregiving routine yet. My wife has been gone 6 months now, but my GP says having been on a goofy schedule for so long it might take me quite awhile to reset my clock because I don't want to take any sleeps aids of any kind.

Remember this: "Courage does not always roar. Sometimes courage is the quite voice at the end of the day simply saying 'I will try again tomorrow.'"

Sending peace, strength, and courage!

Good morning @anncgrl. It's 3 am or so on the west coast. You are so right, being real definitely helps and caregiving is not for wimps. I am not having to care for my husband as extensively as you are yet but every day is different and presents new challenges. I believe being fully awake at this time of the day is not uncommon for any of us. I find strength and encouragement in your words along with the practical suggestions Scott has shared. Wishing you the time each day to also care for yourself.

Thank you, Scott and Debbie! I believe I am blessed to have learned in 33 years of AA that sharing has an immediate positive impact on my perspective. Your responses have proven me true one more time.

Scott, we do have a hospital bed. I am going to ask about the mattress you mentioned. They brought a "thing" for lack of a better word that I thought would be much like a memory foam mattress but it is hard, sinks in under weight and does not allow for movement. I talked with the case worker about changing beds. Another company had provided the bed right after one of my husband's stays in a rehab/nursing home. She said I needed to talk with them. The mattress you describe sounds comfortable. I took the "thing" off of his bed and put his twin mattress on the hospital bed and he is sleeping much better. He resists the bars being up also but I told him last night that I am responsible for taking care of him as his wife and as his assigned primary caregiver so he could live with the rails being up or he would need to move into a place nearby. With frontal temporal dementia some people wander. I am fortunate that he does not have the leg strength to go too far but he does get up and down during the night and he is pretty much a zombie due to medication. I told him this morning he was like having a baby again last night. These things come and go and are worse one day than the other.

He is wearing depends with an extra pad in them and I bought him soft, cotton shorts with an elastic waist that are actually for night or probably underwear for some men. They do not have a fly but are easy to pull down or to the side. Part of the challenge is that his mind talks to him and his body does not respond appropriately. Simple movements become time consuming when his legs are rubbery and he is feeling as if he is going to fall.

We live in a mobile home and the floors are particle board. I pulled up the carpet int he bathroom he uses and did put down covering near the toilet but he decided at some point that the urinal works better for him. The challenge is bowel movements that are often too loose for him to hold them once he figures out that is what is happening. As you might well imagine the particle board is not user friendly with wet of any kind. I am scrubbing the life out of it to clean it and using bleach and will probably come over it one more time. After it is fully dry I am going to paint it and after that dries I am going to put something down that is akin to the sealant used on decks. The word has left my mind. I am going to spread it to cover all the floor and the seams where the floor and wall meet. Polyurethane...that is the word. This will keep anything from soaking into the flooring and will make clean-up much easier.

These are my challenges.

1. Unless he is going to the doctor's office he is not interested in going out. I believe he needs to get out in the fresh air. I would push him in his wheelchair but so far he has not agreed to go.Literature I read suggested that the caregiver offer and suggest in gentle ways that the FTD patient make efforts to go out but not to push them too much. Tomorrow I am going to ask again.

2. He hates showers or baths. It is a fight to get him to get soap and water on him.

3. Well, I cannot think of a third thing. I believe we are at the point that most of my "thinking" needs to be simple.

I have come to believe that he was symptomatic long before we knew something was wrong. He is a loner, avid fisherman, curmudgeon and ;short on words. He has had deep depression with many treatments and hospitalizations. Apathy in human relationships was already present. I am offering to volunteer through the AFTD site to help to educate families about FTD.

Oh yeah, I have adult ADHD in spades. Can you imagine? Organization and a set schedule are so important to people like my husband. They are nearly impossible for me to provide. Mostly it makes for some very humorous situations at this point.

Debbie, I have found that educating myself has been and continues to be invaluable. I do not have a love for neurologists and ours were very inadequate at explaining anything to us. It has been through chat groups, listening on you tube to talks about FTD and reading sites like the Mayo Clinic to help me have some level of comfort.

In Christ,

Lark

Hi again @anncgrl I will look up and see if I have the name in the records. It was a standard hospital bed, but the mattress was filled with air on a continual basis. This had multiple benefits of comfort, fewer bedsores, and with the moving of the air, keeping the patient cooler/warmer depending on the season. You can also alter the firmness. It is now the only mattress our local DME supply house stocks.

I wish you well with your struggle between your ADHD and the demands of your husband. In the case of my wife and MIL, keeping them on a very regular routine was incredibly important to my being able to keep their anxiety at anything close to a manageable level.

Peace,

<br><br>

Hi anncgr. Your situation sounds similar to mine. My husband is 87, has recently gone completely blind and is somewhat incontinent. I make sure he takes immodium if he eats somthing that leads to loose bowels. I also have convinced him to let me know if an accident happens, because he has tried to clean it up himself with disastrous results! So far we're managing without help, but I can feel myself needing some time away from the house by myself. We plan to move closer to our daughter but I'm partially disabled which makes it hard to go through years of accumulation in a large house. As they say, old age isn't for sissies! I'll keep you in my thoughts. Francine

Hello Ann, I am so sorry for what you are going through. I am going to be honest with you, and I am not trying to hurt your feelings. I am a nurse in a psychiatric hospital. When I first started working, I worked on the geriatric unit for 3 years. I loved working with the elderly and still do. The majority of patients there had dementia- frontal lope, temporal lope, Lewy body, alcohol induced, Alzheimer's. Some were as young as 55 years old. Very sad. Most of the patients came from nursing homes because the patient had become combative. Also, some patients come from home, as the family didn't know what to do anymore. You mentioned that you asked your husband to remember to tell you if he needs to go to the bathroom. That is really unrealistic. By the time he tells you, he has probably already gone. There will come a time when he constantly tells you he has to go to the bathroom every 5 minutes. Before I became a nurse, my Dad had dementia and my Mom took care of him at home for a few years. They were both in their early 80's. My sister was a RN who worked at the Veterans Hospital; she is a strong woman so she could help with rolling, lifting, changing him, etc. with my Dad when he could no longer walk. They did have a hospital bed- with an air mattress. (I looked online for air mattresses for you- I don't know if your health insurance, Medicare, Medicaid would cover a hospital air mattress. They are $1,000+. There are air mattresses on Amazon.com- the Serta brand for $148 was given a 4 star rating) At this time- I was not a nurse and I was pretty useless as far as lifting as I have a bad back. My Dad ended up in a nursing home a few miles away from where he and Mom lived, and my other sister and I worked for a newspaper right up the street. So, it was convenient for all being right down the road and Mom visited faithfully twice a day. My Dad's brother Jim was also in the same nursing home with dementia. They put them together in the same room, which was nice. They both had lost their ability to talk and walk. It doesn't get better- it gets worse. Eventually, they don't know you. Or, maybe they do deep inside, but can't express it. What I learned as a nurse working in a dementia ward- you have to go into "their" world. Don't tell him that caring for him "is like taking care of a baby". Also, if he can speak and begins talking as if he is younger or a child and saying such things as - My baby is at home all alone; I've got to get home- you have to reassure them that the baby is okay, and is being taken care of by (use a name- some kind of connection that may click with him) They may say that they have to get home because it is late and their mom and dad will be worried about them. (you have to go into that world and reassure him that you called his Mom and she said it was okay if he stayed the night there) Do not try to tell him that his parents are dead, or that their is no baby, etc. I remember being at my Mom's house before Dad went into the nursing home. We were watching TV with the World Trade Center being blown up. My Dad had no clue what was going on. The first we noticed that there was something going on with my Dad was he forgot how to tie a tie. He worked as an Internal Revenue agent for over 30 years and wore a tie everyday to work. The 2nd was that he always did our tax returns every year- and in 1997 there was a problem with the return. He stayed at home until December 2002. In the nursing home, he rarely spoke, but did smile and laugh when I brought my boys in (they were 5 & 8 years old then) and most of the elderly enjoyed seeing the kids. Dad had a few trips to the hospital due to aspiration pneumonia. He eventually lost his ability to swallow, but he was awake- looking at us, and my Mom and sisters and I made the decision to have a feeding tube put in. I don't think he would have wanted it; but my Mom didn't want to let him go. The feeding tube was put in December 2004. One month before he passed away and my Mom was visiting- as she left, my Dad yelled out to her "Dot, I love you!" Dad passed away July 1, 2005. I miss him so much still 11 years later. And, I think him being in the nursing home was the major reason I quit my management job at the newspaper and returned to college to get my nursing degree. But, working with the patients at my hospital gave me such a better understanding of what these poor elderly people are going through. So, you have my story of a daughter watching her Dad slip away more and more each day, as she cries every night for him. And, as a nurse, who sees strangers going through it and understands what a terrible disease it is. You are right with setting a schedule. One other thing I forget to mention is they "sundown" as the sun goes down. They may be pretty good all day, but gets worse at night. Or, they will sleep all day, and stay up all night. God Bless you and your husband! I will keep you in my prayers. Feel free to private message me. Kathy

Hello @anncgrl, I'm wondering if this alternating air mattress pad for hospital beds may be a less expensive way to go if it works at $70. It also has good reviews but I really don't know anyone who has used something like this. https://www.amazon.com/dp/B00TZ73MUY?psc=1. Praying for strength and comfort for you as I know you have a difficult situation. I was with my sister just for a few days when she was in hospice care in her home before passing away. I can remember not getting much sleep on the couch next to her hospice provided hospital bed. She fell out of the bed a couple of times the first night and the next day we were able to get the rails on the bed which she also hated.

God Bless,
John

Oh my goodness! I do not dare believe my situation is like yours. My heart goes out to you. My mother lived around the corner from me until about three weeks ago. She is 88 yrs old and mostly self-sufficient but I was spending time with her and care taking my husband. As my husband has progressed in his challenges it was simply impossible for me to devote time to both of them. I am fortunate. My sister came here, made arrangements, helped my mother get a place in an independent living facility near her and finally moved her and all her stuff. My mom loves her new apartment and friends at the facility which is also 6 miles from my sister. I am saying this because I cannot imagine you having to try to take care of your husband, yourself and make all the arrangements to move. I don't know how far you plan to move but I am praying that God will provide the people and the means for the move to be done for you and not by you.

I also related to the "disastrous results" comment. I have sure learned to do things I would not have imagined and to do them without being mad about it. Life certainly is an amazing journey. God bless you and please post here so that I know and others know ow you and your husband are getting along.

What a story! I understand your decision to work with elderly people. My husband has been in rehab/nursing homes three times and I met and came to care for so many lovely people in varying stages of whatever was their situation. I became acutely aware of how little interaction they had with people from the outside world. To say I have been deeply impacted would be an understatement.

At this time my husband I can communicate fairly well. He was never one for communicating and has always been to himself so it took awhile before that even seemed out of the ordinary. I hear what you are saying about comments like taking care of him is like taking care of a baby. I use that to tease him but I get your point and will take it to heart.

As you know, frontal lobe dementia has times of getting along pretty good and then times that are difficult. The doctors told us the difficult times will eventually be longer and longer. We are in a slump at the moment. The most difficult thing by far, for me, is the absence of him emotionally and intellectually. At times I forget this is permanent and believe he will be better in a few days. The realization that he is going away in a way that I cannot stop or do anything about is incredibly difficult and fills me with sorrow.

Our social worker came out today. First time we have met her and she is going to work on several things for us. We have been blessed with amazing people as home care nurses, social workers, doctors, etc. All of our doctors are candid about the long term prognosis and how difficult it will be as time passes. We are told that my husband is fairly far along in the progression of FTD. I have nothing to compare it to but I do know all of them have said it will be much more difficult as time passes. I told my husband we are in this together and I mean it. I am so grateful for all the input from people like you. It certainly makes the path easier to walk.