Our blog writing team gets together each season to discuss what’s working, what’s not, and what we need to post more of. At our most recent gathering, we talked about breathing some life in to the What I Wish I Knew Back Then series.
In our May/June Family Caregivers’ Grapevine, George shared some insight in to his journey caring for his father before he passed away. George was quoted in Navigating New Terrain: The Male Caregivers’ Journey, but we thought it would be pertinent to publish some more of his thoughts and tips, since they may help some of you on your caregiving journeys.
Thank you so much for sharing your story, George!
Who did you care for?
For how long?
What kinds of things did you do to help?
Daily check-ins to see how he was doing as he had a progressive disease of dementia. I also took him to doctors appointments, specialist appointments and eye appointments and frequent trips to emergency. Getting his medication and making sure he was taking it was also on the list. I visited him and my mother frequently to ensure everyone was safe and secure. I also had to monitor my Mother who was having a very difficult time with his health physically and emotionally. I took him to the Emergency room several times as his illness progressed and had to help to try and make an informed decision on whether to go ahead with two surgeries.
What impact did caring for your parents have on you emotionally?
It’s emotionally devastating and depressing to see a loved one slowly disintegrate physically and mentally before your eyes. It also alters your relationships with other family members. It was very difficult. The biggest challenge was not having a plan and not having the training to develop a plan. Once we understood what we were dealing with it was much better. Complicating the progressive nature of my fathers dementia was that he developed a potentially fatal aortic aneurysm and if not treated he could die at any moment when the aneurysm burst. We were lucky in that I had taken Dad to emergency and while we were there he asked why his chest was bumping up and down. The Dr did a cat scan and found the aneurysm. Luckily, the ER doctor had a mentor who was just starting an experimental procedure that may provide a relief for the aneurysm. We signed up for this and so now we were working on two life altering problems. There was a good possibility that the pins from the stent might cause the aneurysm to break while they were doing the surgery so this was very stressful. When Dad had his operation with this new experimental procedure unfortunately he had a heart attack but they were able to bring him back. Once that was under control we went back to the dementia problems. As dementia progresses the thought processes get more dysfunctional. In my father’s case he was not connecting with reality any more. I remember getting a call from my Mom at 3 am saying she couldn’t cope any more as my father was trying to climb out his bedroom window. When I got there, he refused to go to the hospital. People with dementia can be very suspicious and I had to talk him into going in to get his back looked at as he said it was hurting. On the way to the ER he was hallucinating and seeing people on the road in front of the car and he grabbed the wheel a few times to avoid hitting these imaginary people. So seeing your father who was totally in control all his life acting in this odd fashion was extremely stressful and I was in survivor mode as I didn’t know what was coming up and he was going to do minute to minute. The 30 minute drive to the hospital ER was the longest drive of my life. Dementia is a challenging disease as the patient will frequently stay up all night and sleep during the day. Also, they may decide to go for a long walk at 3 am thinking they are in some other part of the word. With a disease like progressive dementia, there is another challenge. Basically when your parent gets a progressive dementia, the parent you knew and loved is gone. It is replaced by a new person who looks just like your old parent but comes with a brand new set of perspective, values and memories. So on top of caregiving you must go through a grieving process just like they had died already while at the same time providing the care that everyone needs.
Another impact was when we left after a visit at the care home, he would always ask “Can I come home today?” It was heartbreaking on a daily basis. I also had to aggregate information in order to make some extremely difficult decisions on whether he should have surgeries or not at his advanced age. These were both terrible decisions to make as in both cases the alternative to not having surgery could be fatal or the surgery itself
could be fatal. What a horrible decision to have to make.
What kinds of support did you have in your caregiving journey?
Support was very limited really. The doctor shortage doesn’t help anybody. Being confronted with a disease without training is kind of like the ridiculousness of having a
baby without any training. Babies don’t come with a manual. Why not? The biggest challenge which drains you emotionally is first not knowing what to do and then wondering if you’re doing the right thing. Not knowing where to go for help is a problem. Also, when there is a problem at 2 am where can you get the help you need? The challenge of caring for someone with severe health challenges also means it’s a 24×7 responsibility and something can go wrong at any time. And if someone is prone to running away there are other challenges. Without the internet, our family would have been totally lost as there are so many factions that require examination and execution.
Complex care is challenging as you don’t know what to do and you often have to help treat the patient as well as the loved ones around him. In my case this meant not only helping my father but providing emotional support with my mother and sister. Often times, other family members have completely diametrically opposed ideas on what the care should be and this makes a bad situation even worse. In addition some family members tend to downplay how sick. Once diagnosed, there can be a problem with wait times to get into a care home and then there is the financial hit that the family takes of 80% of their income going to the government. Also the amount of paperwork involved with all of this is overwhelming. Once he was admitted to a hospital he tried to escape several times so had to have a security guard on the floor to keep him in. He was in a room with 3 other men with dementia. When we went back 6 months later at least one of the men was still in the room. The fear of the unknown is huge for these situations. At hospital a social worker gets involved and then you’re told that there is a lottery for where the person ends up. In our case, my father may have been placed in a home over 30 miles away which would have made it impossible for my Mom to visit regularly. All of a sudden a very normal life is turned upside down for both my Mother and Father.
What helped most?
What helped most was getting educated in order to build an effective care plan which was overwhelming at first. When a loved one is struck with a disease it is extremely challenging to know what to do as the disease is complex and needs care and attention from many sectors. In my case, I had to navigate the physical disease as well as the mental disease and I was trained in neither. There is also the emotion of knowing that your father is alive but is gone so another patient added to the list is yourself. Grieving his death while he is still alive is a very strange experience. In order to get help you have to navigate the health care system which is extremely difficult when it comes to intangible problems like mental health. Extensive research online provided us with several practical educational aids to get educated. In the beginning you don’t even know what questions to ask. Then, drilling deeper I found practical guides on how to deal with dementia patients and specifically how to answer many of the hard questions that they will ask you. This was a great help. But often the patient just won’t cooperate and it really rips at your soul. The mental health system is even more complex to navigate. I can understand how difficult this is for practitioners as the patient appears normal but isn’t.
Nobody including yourself understanding the scope of the illness and how to care for it
effectively and practically. The lack of mental health resources was also a problem. The other challenge is family members blaming you for the wrong care, lack of care or other reasons. Often the other family members are suffering and just need to focus the blame on someone and the person leading the care is often the target of this.
What kind of positive things did you get from caregiving?
Knowing that you were taking care of someone in their darkest hours and that they had taken care of you all your life. It was nice to be able to give back even though the sorrow was often overwhelming. Once I realized that I had to grieve that my father had gone even though he was still alive, things got better. It was like there was a new chapter of the book and I could work on that in a positive way.
What were some of the challenges?
The scope of illness was huge and not knowing where to go for help and once knowing where to go how you could manipulate the system to get what you needed out of it.
Things like wait times were challenging. Psychiatric drugs are also incredibly challenging to the non-healthcare person. Many drugs are used and it is not known at the time if they will make the patient better or worse. Adding to this is that many of the drugs take 3 to 6 weeks to become effective. Side effects can be very dangerous to both the patient and the caregiver.
What sorts of things did you do for yourself to help cope?
I kept researching looking for the tools and the answers so that I had an idea of what it was I was trying to manage.
Is there anything you needed that could have helped that you didn’t get?
It seems to me that a package of education would be very effective. In my case, there was the emergency, the hospital stay, the ongoing treatment, the acquisition of the care home and then having to help my Mom emotionally and financially. This involved lots of people, lots of forms and lots of worry on how to pay for it all.
As a male, do you feel that you faced any particular challenges or obstacles?
As a male providing care to another male I don’t believe I encountered any major obstacles. That being said, I think that anybody who is a Mom has years of valuable training and experience that many men don’t have as they lack that experience of caring for someone. However, if I rewrote this paper about the care we gave a female member of the family then it would be entirely different as often the health issues can involve personal, physical and hygiene issues that a male would not be able to effectively deliver.
Do you have any advice for men starting out on their caregiving journey?
My only advice would be to try and gather all the practical information about the care of the specific disease as you can and build an effective plan. Getting the right documents from an experienced source is gold. However, one of the problems is that you don’t know what questions to ask if you’re starting from scratch.
I think that finding a caring social worker or care worker will save everyone a lot of headache and heartache.
Anything else you’d like to add?
I think a good package (education) would be very helpful:
1. A description of the disease
b. Thinking and Reasoning
c. Making Judgments and Decisions
d. Planning and Performing Familiar Tasks
e. Changes in Personality and Behaviour
a. Drugs and Expectations
b. Complications of Drugs
6. Creating a Safe and Supportive Environment
The above covers the patient, but what about the family members impacted by the disease. This can also be very complicated and gut wrenching. A practical guide tailored to the disease would be very useful which might include things like the hourly routines and log books of medicines administered, etc. Also, emergency numbers that can help 24 hours a day. How to get in touch with a social worker for guidance and to find out what assistance might be available would be very valuable as the healthcare world is huge and unknown to someone like myself. Also a practical package of what to do when something happens in the day of the patient or how to conduct a conversation with the patient so you don’t cause extreme stress to him ie. Don’t ask them what day or time it is or what they did today, instead talk about the weather as it is now. I think having access to a flight plan is the most important thing that can be offered in a case like this.
Any other comments?
This comment is related to when I helped my Mom. If the disease is terminal and the patient wants to stay at home, explore the Hospice options that can provide excellent care at home (my Mom used this – she suffered congestive heart failure) and the nurse and doctor resources were wonderful.